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background globally between 82000 and 99000 young people start smoking every day 1 although the proportion of 815 year olds in the united kingdom who have ever smoked has declined from 187 in 1997 to 6 in 2013 2 over 200000 start to smoke each year 3 smoking poses many health risks including various forms of cancer cardiovascular disease and respiratory disease and imposes a significant financial and social burden on society 4 therefore smoking prevention remains an important public health priority 5 efforts to delay or prevent children from starting to smoke are needed because the earlier a child starts to smoke the less likely they are to quit the habit as an adult and the more likely they are to die prematurely from a smokingrelated disease 6 primary school children represent an important cohort for smoking prevention as regular smoking is not yet established 2 although these children do not smoke they may have developed intentions regarding future smoking 7 in accordance with the theory of planned behaviour 8 future intentions to smoke predict subsequent smoking behaviour 79 in turn intentions to smoke are shaped by an individuals smokingrelated cognitions such as attitudes and selfefficacy expectations 8 10 11 12 research in adolescents has demonstrated that individual cognitions are formed by distal factors at the interpersonal level such as family and peers 1314 less is known about the factors that influence preadolescent childrens individual cognitions and such knowledge can be used to inform the development of smoking prevention interventions banduras social learning theory 15 postulates that smoking behaviour may be directly acquired through modelling the behaviour of significant others similarly attitudes and values towards smoking are partly formed from observing others smoking 15 in accordance with social learning theory previous studies have shown parental sibling and peer smoking to be significant risk factors for smoking uptake 1617 previous research in us preadolescents has shown that having a family member that smokes is associated with more favourable implicit attitudes towards smoking compared with preadolescent children with nonsmoking family members 18 similarly research in dutch preadolescent children found exposure to parental sibling and peer smoking to be associated with having more prosmoking attitudes 19 parental smoking was also related to perceived safety of casual smoking and temptation to smoke in response to smoking related cues such as seeing someone smoke 19 accumulative evidence suggests that there are gender differences concerning the influence of social factors on smoking uptake in adolescents 2021 for example mother smoking is reported to influence smoking uptake in girls 20 whereas father and friend smoking have been found to be stronger influences for boys 2223 however the influence of social factors on the antecedents of smoking behaviour in preadolescent boys and girls is less clear such knowledge may inform decisions surrounding the inclusion of genderspecific components in smoking prevention interventions targeted at preadolescent children smoking is socially patterned with high smoking prevalence among low socioeconomic status groups 24 this is important as smoking is the leading cause of health inequalities 25 addressing inequalities in tobacco use is therefore a public health priority 26 and socially deprived areas have been identified as an important target for smoking interventions 27 ses is widely regarded as being an important determinant of smoking uptake in young people as children who live and go to school in socially deprived areas are more often exposed to smoking behaviour 2428 given that children who live in deprived neighbourhoods are likely to include a predisposition to experiment with smoking 29 further insight into factors that influence smokingrelated cognitions in these groups can provide additional knowledge to inform the development of interventions a recent and large crosssectional study of dutch primary school children found that the smoking behaviour of the father mother and other family members was shown to be the most influential on the intention to smoke among children living in a low ses area though more evidence is needed 30 to the authors knowledge the only published uk study that has been conducted with preadolescent children is the liverpool longitudinal study 31 32 33 the city of liverpool is one of five metropolitan boroughs in merseyside england and is ranked among the most deprived local authorities in england 34 in the llss study 8 of nine year olds had tried smoking with rates rising to 21 at age 10 and to 27 at age 11 smoking experimentation was higher amongst boys at age 10 and factors associated with childrens smoking were parental and best friend smoking curiosity living in a low income family and residing in a deprived area however the llss was a largely qualitative study that included a small cohort of children from six primary schools in a localised area of liverpool further whilst the llss examined smoking uptake it did not examine factors associated with intentions to smoke and individual smokingrelated cognitions which are important from a primary prevention perspective this paper seeks to extend the llss by conducting a large quantitative study and involving a regional population of 910 year primary school children from two metropolitan boroughs in merseyside further the research aims to add to the limited evidence base of studies investigating the influence of social factors on outcomes relevant for primary prevention in particular among low ses populations therefore the present study aimed to examine the association between social factors and intentions to smoke and individual smokingrelated cognitions among preadolescent children from socially deprived areas of the uk the study investigated social influences on these aspects of cognitive vulnerability toward smoking by gender as at present there is only limited understanding of the reasons behind gender patterns in smoking 35 methods participants and procedures this crosssectional study presents baseline data collected from a smoking prevention intervention study called smokefree sports between septemberoctober 2012 smokefree sports is a 7month physical activity intervention involving coach and teacher training and the provision of sports activities to prevent smoking among 910 year old primary school children in liverpool a city in merseyside england the intervention has been described in detail elsewhere 36 and will be evaluated within a nonrandomised controlled trial since the funding for the project required that the intervention be offered to all schools in liverpool randomisation of local schools was not possible therefore prior to the recruitment of schools liverpool was matched with knowsley another metropolitan borough in merseyside on the basis of population data including adult smoking rates 37 deprivation level 38 and ethnic composition 39 children in the present study were therefore recruited through primary schools in liverpool and knowsley local authorities merseyside provides a unique context for the research as it has some of the most deprived local authorities in england 34 furthermore the health of children and young people in liverpool and knowsley is worse than the england average 4041 ethical approval for the study was granted by liverpool john moores university research ethics committee in september 2012 all eligible primary schools from liverpool and knowsley were invited to participate in the study schools received information about the project via email and post to enhance participation rates schools who had not responded were followedup with telephone calls following initial communication with each school site visits were made by the research team to share information about the project with staff acting as study coordinators study information was passed on to senior staff members and written consent was requested if they wished their school to participate in total 43 schools agreed to take part in the study including 32 from liverpool and 11 from knowsley schools that declined to participate provided diverse reasons for not taking part in participating schools all year 5 children were invited to take part this age group was chosen because by age 11 almost one quarter of children will have tried smoking 42 furthermore whilst it is not mandatory to address smoking education in key stage 2 of the uk national curriculum 43 the national institute for health and care excellence 44 postulates that smoking prevention efforts would be most effective if they began in primary school to recruit children the ethics committee gave approval for a passive informed consent procedure with parentsguardians provided with an opportunity to opt out of the study if they did not want their child to participate specifically schools were given a stamped addressed envelope containing a participant information sheet and optout form to mail to parents parents could opt their child out of the study by signing and returning the optout form or calling the research team following an optout deadline of at least two weeks schools were visited to obtain child assent and collect baseline data parental consent and child assent were obtained for 1339 children during data collection 123 children were absent from class children were excluded from the study if they had a special class placement difficulty in speaking and or understanding the english language or incomplete outcome measures the smoking questionnaire was completed on school laptop computers using a webbased survey a member of the research team stood at the front of the class and guided children through the questionnaire and read questions aloud as required by children to aid true and accurate responses questionnaires were completed in silence and confidentiality was stressed to all participants the online survey took children approximately 30 minutes to complete completed surveys were submitted by each child and responses were immediately transmitted to a secure electronic database for subsequent analysis measures smoking questionnaire a questionnaire was constructed using items adapted from questionnaires previously used with this age group 45 46 47 48 demographic information measured included age gender ethnicity and ses home postcodes provided by the children were used to estimate ses postcode data was entered into geoconvert 49 a free online tool that generates indices of multiple deprivation scores imd scores are a composite of seven domains of deprivation 50 with higher scores representing higher degrees of neighbourhood deprivation and therefore lower ses individual level outcome measures included intention to smoke and smokingrelated cognitions such as refusal selfefficacy and attitudes toward smoking parent sibling and friend smoking behaviour were assessed to examine the influence of social factors child smoking behaviour was measured for descriptive purposes using a single item from the health survey for england 48 children were asked to indicate which of five stages of smoking best described them from i have never smoked not even one puff to i smoke at least once a day responses were recoded to never tried smoking and tried smoking as an indicator of smoking status expired carbon monoxide concentrations were taken in private and recorded using a picosimple smokerlyzer with a reading above 10 ppm used as cutoff for defining smokers 51 individual cognitive vulnerability to smoking intention to smoke was assessed using two items from the health survey for england 48 do you think you will smoke in the next monthyear as well as an item designed by the research team do you think you will smoke in secondary school responses ranged from definitely yes to definitely not and were summed to produce a total intention score refusal selfefficacy was measured using three items adapted from a nineitem selfefficacy scale in adolescents 45 pilot work with children indicated that the question and answer formats used within these items were developmentally inappropriate for 910 year olds and therefore each item was amended to reflect this age level items assessed the childs confidence in their ability to be a nonsmoker and refuse cigarettes in different situations how confident are you that you can stay a nonsmoker how confident are you that you could say no to a cigarette if someone offered you one and how confident are you that you could be a nonsmoker if your friends smoke responses consisted of likert scales ranging from not confident at all to very confident and were summed to create a total refusal selfefficacy score cronbach alpha for the combined scale showed good internal consistency a high score on the scale indicates a high level of refusal selfefficacy attitude structure includes affective behavioural and cognitive components 52 for the purpose of this study childrens beliefs and knowledge about smoking were explored through the cognitive component of attitudes adapted from the global youth tobacco survey 47 and the health survey for england 48 including do you think smoking is bad for your health once someone has started smoking do you think it will be difficult to quit do you think that it is safe to smoke for only a year or two as long as you quit after that do you think the smoke from other peoples cigarettes is harmful to you an additional item do you think smoking effects sport performance was developed by the research team responses ranged from definitely not to definitely yes a summary scale was created but internal consistency was low since the data for individual attitude items were positively skewed and distribution was not improved by statistical transformation responses were collapsed into dichotomous variables for analyses a definitive negative attitude towards smoking was scored 1 the remaining response categories indicated a more favourable attitude towards smoking and thus were collapsed into a single group and scored 0 one attitude item was reverse coded in order to maintain consistent scale direction for all items an additional attitude item do you think smoking makes you gain weight was also included from the health survey for england 48 responses for this item were collapsed into a dichotomous variable for analysis with no difference scored 1 and the remaining response categories grouped and scored 0 parent sibling and friend smoking behaviour perceived parent and sibling smoking behaviour were assessed using an item taken from the health survey for england 48 children were asked to select who in their family smokes from nine items and could enter additional family members who smoke if necessary since this study was concerned with the influences of immediate family members only mother father and sibling smoking behaviours were used in the analyses children with a smoking motherfathersibling were scored 1 children with a nonsmoking motherfathersibling were scored 0 perceived friend smoking was assessed using two items adapted from an existing survey 46 do any of your friends smoke and have any of your friends tried smoking responses were 1 none of my friends 2 a few of my friends 3 most of my friends 4 all of my friends for subsequent analysis items and responses were collapsed to create the dichotomous variable of friends had not tried smoking or friends smoke analyses descriptive statistics were calculated for the sample and by gender and reported as means or proportions gender differences in means were examined using independent ttests with categorical variables tested using chisquare tests of association multilevel linear and logistic regression analyses were conducted to examine continuous variables and dichotomous outcome measures respectively to account for children being nested in schools a 2level data structure was used children were defined as the first level unit of analysis and school was the second level unit of analysis separate analyses were conducted for boys and girls to assess associations between mother father sibling and friend smoking and intentions to smoke and smokingrelated cognitions adjusting for deprivation level each model was adjusted for other individual level cognitive variables since these variables may influence each other 815 regression coefficients in each model were assessed for significance using the wald statistic analyses were performed using mlwin 230 software with statistical significance set at p 005 results descriptive statistics and gender differences for the study sample are presented in table 1 a high proportion of the children were white british with the remaining children selfidentified as black white nonbritish mixed race asian chinese or other nonbritish whilst a high proportion of children agreed that smoking is definitely bad for health more favourable attitudes towards smoking were observed for the remaining attitude items approximately six out of ten children indicated that they definitely agreed that it is not safe to smoke for a year or two as long as you quit after that the smoke from other peoples cigarettes is harmful to you and that smoking effects sports performance further only half of children believed that it is definitely difficult to quit smoking once started whilst almost six out of ten children stated that smoking makes you either gain or lose weight gender differences are also shown in table 1 compared to girls boys had lower nonsmoking intentions and refusal selfefficacy in addition boys reported having more smoking friends whilst a higher proportion of girls than boys believed that smoking is definitely bad for health no other sex differences were observed nonsmoking intentions table 2 shows associations between social factors and nonsmoking intentions after adjustment for refusal selfefficacy attitudes towards smoking and school and deprivation level friend smoking was negatively associated with nonsmoking intentions in both boys and girls sibling smoking was negatively associated with nonsmoking intentions in girls but a positive association was found in boys neither mother nor father smoking behaviour was associated with nonsmoking intentions refusal selfefficacy table 2 also shows associations between social factors and refusal selfefficacy after adjustment for nonsmoking intentions attitudes towards smoking and school and deprivation level friend smoking was negatively associated with refusal selfefficacy in girls but not boys neither mother father nor sibling smoking was associated with refusal selfefficacy attitudes towards smoking table 3 presents associations between social factors and childrens attitudes towards smoking after adjustment for nonsmoking intentions refusal selfefficacy and school and deprivation level significant associations were observed for social factors and attitudes toward smoking on two out of six attitude items for boys however no associations were found in girls compared to boys with nonsmoking friends boys with smoking friends were less likely to definitely believe that smoking is bad for your health 038 95 ci 021 to 069 at least one friend smokes or tried beta values reflect the associations between mother father sibling and friends smoking and nonsmoking intentions or refusal selfefficacy all models were adjusted for school and deprivation level nonsmoking intention models were also adjusted for refusal selfefficacy and attitudes towards smoking refusalselfefficacy models were also adjusted for nonsmoking intentions and attitudes towards smoking significant association notes or odds ratio ci confidence interval or values reflect the strength of association between mother father sibling or friend smoking on attitudes towards smoking all models were adjusted for nonsmoking intentions refusal selfefficacy and school and deprivation level significant association p 001 and the smoke from other peoples cigarettes is harmful to you in comparison to boys with a nonsmoking sibling boys with a smoking sibling were less likely to definitely believe that smoking is bad for your health mother father and sibling smoking were not associated with any attitude items in boys or girls discussion the aim of the present study was to identify whether mother father sibling and friend smoking were associated with cognitive vulnerability to smoking among 910 year old children from deprived neighbourhoods in merseyside england the results indicate that sibling and friend smoking may represent more salient influences on childrens cognitive vulnerability to smoking than mother and father smoking moreover some differential effects were observed by gender suggesting that social factors may in part influence the antecedents of smoking behaviour in boys and girls differently these findings extend the llss 31 32 33 and add to the limited evidence base in preadolescent children slt proposes that behaviour perceptions of behaviour and the environment interact to influence one another 15 in accordance with slt 15 parents have previously been considered to be the most important influences on children during the primary school years 53 while peer influences become increasingly more salient during the adolescent years 54 in the present study mother and father smoking was relatively high which is reflective of the local context in merseyside where levels of smoking and deprivation are higher than the national average 438 children of smoking parents are at a higher risk of having susceptible smoking cognitions 121819 54 55 56 and initiating smoking 16 especially those in lower socioeconomic status groups 30 however in the current study no associations were observed between mother or father smoking and childrens nonsmoking intentions smokingrelated attitudes and refusal selfefficacy a possible explanation for the divergence in findings is that whilst this study examined independent influences of mother and father smoking other studies 121819 54 55 56 utilised a combined parental smoking variable for analyses to check this we conducted additional analysis using a combined parental smoking variable but found no further associations alternatively whilst children are aware that their parents smoke their exposure to smokers may vary 19 as a result of regional public health campaigns to protect children from smoking such as take 7 steps out in addition smoking parents may communicate nonsmoking expectations to their offspring or display disapproval of child smoking which has been found to be protective against smoking intention and initiation 1630535758 nevertheless further research is needed to examine the influence of mother or father smoking behaviour on childrens cognitive vulnerability towards smoking the results of the present study suggest that sibling and friend smoking may be important influences on preadolescent childrens cognitive vulnerability towards smoking friend smoking was negatively associated with nonsmoking intentions in both boys and girls extending previous studies in adolescents that have found peer smoking to be related to smoking uptake 17 the influence of sibling smoking however differed by gender sibling smoking was negatively associated with nonsmoking intentions in girls which is consistent with the accumulative evidence 16 conversely a positive association was apparent in boys suggesting that having a smoking sibling strengthened their nonsmoking intentions this finding was unexpected but may reflect parent disapproval of sibling smoking and communication of nonsmoking expectations 5357 although more research is needed gender differences were also found in relation to refusal selfefficacy and attitudes toward smoking friend smoking was negatively associated with refusal selfefficacy in girls but not boys further boys with a smoking friend or sibling had less negative attitudes towards smoking regarding the health consequences of smoking and the harms of others smoke though no associations were observed in girls boys reported having more smoking friends than girls which may have contributed to these effects since children who perceive that many of their friends advocate or engage in smoking are more likely to develop prosmoking attitudes 19 further boys may assume that smoking is not as harmful otherwise their friendsibling would not smoke to the authors knowledge only one other study has concurrently examined the role of parent sibling and friend smoking in shaping preadolescents cognitive vulnerability to smoking 19 using structural equation modelling schuck et al 19 found no direct effects of parental smoking sibling smoking or peer smoking on 912 year old childrens susceptibility towards smoking however peer sibling and in particular parent smoking was associated with perceiving more pros of smoking further parent smoking was positively associated with perceived safety of casual smoking and cuetriggered wanting to smoke 19 these findings are inconsistent with the current study and may reflect cultural differences and different methodologies employed future studies examining the influence of the social environment in preadolescents are warranted the findings observed for friend and sibling smoking on childrens cognitive vulnerability to smoking could be attributed to several factors firstly while children in the early primary school years are likely to spend a lot of time with their parents it is probable that older children spend more time with siblings and friends the findings may therefore reflect the fact that friends and siblings increasingly represent childrens predominant social environment and are likely to be more proximal influences on childrens vulnerability to smoking than parents second peer and sibling smoking behaviour is likely to be less overt than parent smoking and as a consequence may be perceived by other children as exciting or cool and socially desirable 59 peer groups are known to share common attitudes and behaviours 6061 smokers may communicate prosmoking attitudes and approval of smoking initiation 62 which in turn could influence intentions to smoke and smokingrelated cognitions among children third whilst the majority of children stated that they had never tried smoking around a sixth believed that they knew a friend that had it is possible that children may have underreported their own smoking status or perhaps overestimated their friends smoking habits given that overestimation of smoking prevalence is related to smoking initiation in preadolescent children 63 overestimation of friend and sibling smoking by children in the current study may have influenced their cognitive aspects around smoking taken together the results suggest that friend and sibling smoking behaviours may contribute to preadolescent childrens cognitive vulnerability to smoking however more evidence is required and research is needed to determine the mechanisms associated with peer and sibling influence encouragingly most children displayed strong nonsmoking intentions and refusal selfefficacy reflecting the high intention not to smoke few children had tried smoking which is consistent with other studies in preadolescent children 3132 nice guidance 44 states that smoking prevention efforts may be more effective if started in primary school given the low rates of smoking experimentation 910 year old children could be an appropriate cohort to target for primary prevention while encouraging results regarding childrens high refusal selfefficacy should be interpreted with caution because children at this age may not have encountered situations where they have been put to the test to resist influences to smoke from others 55 because decreases in selfefficacy have been associated with smoking onset and continuation in adolescents 6465 efforts to maintain the strength of preadolescent childrens smoking refusal selfefficacy may be effective in preventing them from starting to smoke previous schoolbased interventions that have taught adolescents to deal with direct pressure to smoke have demonstrated modest positive results on smoking behaviour 6667 prevention interventions may also need to address childrens attitudes toward smoking as over a third of participants in this study did not recognise with certainty that short term smoking is not safe that smoking is addictive that others smoke is harmful that smoking effects sport performance and that smoking per se does not influence weight more positive attitudes toward smoking may predict intentions to smoke in the future and later smoking behaviour 8 10 11 12 previous research has called for further investigations into the need for genderspecific approaches to prevent smoking 30 the current study found gender differences in the influence of social factors in addition compared with girls boys were less likely to believe smoking is definitely bad for health and expressed lower nonsmoking intentions and refusal selfefficacy however no clear pattern emerges from the data and qualitative research may prove useful in revealing the thought processes through which boys and girls form these smokingrelated cognitions previous research with dutch preadolescent children has reported it unnecessary to develop separate smoking prevention programmes for preadolescent children 64 given that the influences on boys and girls intentions to smoke were broadly similar the results of the present study provide tentative support to this statement nevertheless intervention and prevention efforts aimed at preadolescents may benefit from tailored messaging that dispels myths about the health consequences of smoking and exposure to smoke as well as strengthening refusal selfefficacy this study extends the smoking literature in preadolescent children by examining the influence of social factors on cognitive vulnerability to smoking among a large sample of 910 year old children from deprived neighbourhoods however the study has a number of limitations first the analysis is based on a selfreported crosssectional survey therefore causal relationships cannot be established in addition the study examined influences on intentions to smoke and smokingrelated cognitions which may or may not result in smoking initiation at a later age 30 nevertheless previous research demonstrates that these individual level factors are predictive of future smoking behaviour 8 10 11 12 second children selfreported their smoking behaviour which introduces the possibility of under or over reporting because of recall or social desirability 55 however selfreported smoking has been demonstrated to be accurate provided confidentiality is assured 68 moreover childrens selfreported nonsmoking status was confirmed using an objective measure of smoking third direct measures of parental and friend smoking behaviours were not available though previous research has demonstrated that children can reliably assess the smoking behaviour of others in their social environment 69 fourth this study only examined the influence of biological family members and did not assess the influence of parental structure previous research has shown adolescents who live with both biological parents smoke less than those living in singleparent families 70 in addition we did not collect genderspecific data on sibling smoking and therefore could not distinguish between the influence of brothers or sisters on the outcome variables finally results are drawn from two deprived local authorities with high adult smoking prevalence which limits the generalisability of results to other regions of england however given that smoking is socially patterned findings can be generalised to similar urban areas with high levels of deprivation where the need for smoking prevention is proportionally greater conclusions in summary the present study showed that whilst the majority of 910 year old children living in deprived communities had high nonsmoking intentions and refusal selfefficacy a substantial proportion displayed prosmoking attitudes that could be addressed through smoking prevention efforts findings showed that social factors were associated with childrens cognitive vulnerability toward smoking with the smoking behaviour of siblings and friends being identified as important influences whilst some differential findings by gender were observed these may not be sufficient to warrant separate intervention approaches this knowledge may aid the development of future smoking prevention interventions though further research is needed competing interests the authors declare that they have no competing interests authors contributions cem drafted the manuscript and together with jt was responsible for data collection and analyses lf conceived and managed the project as principal investigator cm jt sf rm lp mu and lf made substantial contributions to the study design interpretation of data and editing the manuscript all authors read and approved the final manuscript

background smoking often starts in early adolescence and addiction can occur rapidly for effective smoking prevention there is a need to identify at risk groups of preadolescent children and whether genderspecific intervention components are necessary this study aimed to examine associations between mother father sibling and friend smoking and cognitive vulnerability to smoking among preadolescent children living in deprived neighbourhoods methods crosssectional data was collected from 910 year old children n 1143 507 girls 856 white british from 43 primary schools in merseyside england children completed a questionnaire that assessed their smokingrelated behaviour intentions attitudes and refusal selfefficacy as well as parent sibling and friend smoking data for boys and girls were analysed separately using multilevel linear and logistic regression models adjusting for individual cognitions and school and deprivation level results compared to girls boys had lower nonsmoking intentions p 002 refusal selfefficacy p 004 and were less likely to agree that smoking is definitely bad for health p 001 friend smoking was negatively associated with nonsmoking intentions in girls p 001 and boys p 001 and with refusal selfefficacy in girls p 001 sibling smoking was negatively associated with nonsmoking intentions in girls p 001 but a positive association was found in boys p 002 boys who had a smoking friend were less likely to definitely believe that the smoke from other peoples cigarettes is harmful or 057 95 ci 035 to 091 p 002 further boys with a smoking friend or 038 95 ci 021 to 069 p 001 or a smoking sibling or 045 95 ci 021 to 098 were less likely to definitely believe that smoking is bad for health conclusion this study indicates that sibling and friend smoking may represent important influences on 910 year old childrens cognitive vulnerability toward smoking whilst some differential findings by gender were observed these may not be sufficient to warrant separate prevention interventions however further research is needed

introduction in 2010 the who signalled that on a global scale 81 of adolescents between the ages of 11 and 17 were sedentary 1 subsequent studies describe only a slight evolution in the data 2 considering gender the situation is particularly bad for girls who increased their prevalence of physical inactivity even setting it at over 83 3 the factors that contribute to the maintenance of these figures are numerous and have been studied by different institutions and researchers 4 as a part of this effort a new line of research emerged to address subjective perception of physical activity as a factor that can significantly contribute to the reproduction of behavioural models that steer adolescents away from active lifestyles as the basic concept of this body of research perception refers to sensory awareness and depends on the knowledge and opinions held by the individual about what it is being assessed 5 6 7 if we talk specifically about perception of pa subjectivity is also present 8 that is when people are asked to assess their own level of pa their previous knowledge could determine the realism of their assessments 9 in this way two people who demonstrate similar pa habits may differ in their assessments in accordance with previously acquired knowledge 10 a part of previous literature has considered subjective perception of pa from the perspective of adolescents themselves and it has been shown that a high subjective attribution of importance to pa could be a key element to achieving and maintaining an active lifestyle 11 to this regard greca et al 12 pointed out that it is important for these young individuals to perceive themselves as active on their own merits when doing pa with the aim of eliminating the rate of sedentarism for their part van sluijs griffin and van poppel 13 affirm that people who consider themselves to be more active than they really are have a healthier lifestyle than those who perceive themselves as sedentary only a few studies have analysed the pa awareness of european adolescents 1415 according to their findings 603 to 809 of adolescents believe that they are physically active when they are not when considering possible gender differences it has been observed in some studies that boys perceive themselves to be up to 38 times more active than girls 16 moreover it has been pointed out that in the 1217 age group girls with higher levels of body dissatisfaction and worse bmis reveal a more devalued physical selfconcept 17 which could lead them to do less pa 18 19 20 21 notwithstanding previous studies have scarcely considered potential gender influences over the realism of adolescents assessments to this regard corder and colleagues 14 found that compared with girls boys were less likely to overestimate their pa in another brand of research subjective perception of adolescents pa was considered from the perspective of their parents and to this regard wash et al 22 highlighted the potentially important role of parents perceptions in tackling their childrens sedentary habits other authors consider that when parents portray their offspring as being active when in fact they are not then their physical habits will never change 23 but parents do not only have a potentially negative effect since they can also represent a positive influence that helps their children to achieve an active lifestyle 10 characterised by including a daily minimum of 60 min of moderatetovigorous intensity pa mainly aerobic along with musclestrengthening activities carried out two to three times a week 24 however it has been described that parents commonly overestimate the amount of pa their children do 25 and where this occurs the perception of parents could contribute towards perpetuating the problem of inactivity 2627 when analysing whether the parental influence is dependent on their gender some studies suggest that the role of fathers with regard to the influence on their childrens pa habits takes precedence over that of mothers and it is also more effective in promoting a healthy lifestyle for sons as opposed to daughters 28 29 30 nevertheless the differences in parents perceptions that might result from the gender of their offspring remain unexplored besides to the authors knowledge no previous studies have examined the level of agreement between pa assessments by adolescents and their parents consequently the aims of the present study were to examine the pa awareness of adolescents and their parents determine the level of agreement between the adolescents and parental assessments and identify gender influences on the pa awareness of adolescents and their parents method variables table 2 shows the dependent variables considered while the only independent variable was gender data collection instrument the international students lifestyle questionnaire previously used in numerous studies 31 32 33 34 was used as the data collection instrument this questionnaire comprises 39 closedended questions structured in 4 dimensions personal data lifestyle habits attitudes and perceptions and evaluation of school physical education and pa the analysis included in this study focuses on dimensions 2 and 3 cronbachs alpha was used as an internal consistency index to evaluate the reliability of the instrument with values of α 089 and α 075 for dimensions 2 and 3 respectively procedure once the schools taking part in the study were chosen their principals were contacted by telephone and asked to collaborate after this first contact written detailed information about the general aims of the study and its procedures was mailed to the principals in order to clarify any doubt the anonymous and voluntary participation of both schools and their students was emphasised upon acceptance written authorisation from principals and informed consent from both the adolescents and their parents were obtained finally the questionnaire was administered to each class group independently under the coordination of each individual school and in the presence of the pe teachers the study was carried out in accordance with the ethical standards of sports sciences 35 the protocol was approved by the universidade da coruñas teaching and research ethics committee in the framework of implementing a wider proposal within the euroamerican physical activity education and health network data analysis firstly we performed a descriptive analysis characterising the frequency and time the adolescents girls and boys spent doing pa in different contexts through frequencies and percentages furthermore the data were reduced in order to obtain an overall proxy variable of the true level of pa carried out by the adolescents in this sense participants were classified as active or sedentary in accordance with whether or not they complied with the minimum recommendations established by the who for their age group 24 in order to do this participants were classified as active if their reports of pa comprised a minimum of 7 h and 7 times a week where this condition was not fulfilled participants were classified as sedentary this proxy variable was also described through frequencies and percentages the pa done by adolescents was also subject to a comparison in accordance with gender using the chisquare test we then performed a descriptive analysis of adolescents and parents perceptions regarding the pa level of the former frequencies and percentages were calculated for each gender group and compared via chisquare tests then odds ratios were computed in order to compare the probabilities of adolescents being perceived as active according to gender to accomplish this later analysis previous data reduction was necessary and hence adolescents and parents assessments were dichotomised thirdly we performed an analysis both for each gender group and overall of the level of correspondence between actual and perceived activity levels as well as between the perceptions of adolescents and their parents and the perceptions of parents among themselves cohens kappa coefficient was used to provide a measure of agreement all of the analyses described were performed using spss statistics for windows version 200 establishing a value of p 005 for the statistical significance of the contrasts results true physical activity level of adolescents table 3 shows the characterisation of the pa of the adolescents participating in the study the majority of pa for both the boys and the girls took place outside school hours and was unsupervised in this context statistically significant differences were observed in terms of gender with a greater frequency of activity for boys of whom 451 registered a frequency of four times or more per week while the percentage corresponding to girls was only 258 when analysing the activity performed under the supervision of a sports or pa professional statistically significant differences were also found in terms of gender both in school and outside school with a higher frequency of activity in boys specifically with regard to the percentage of boys who affirmed that they did pa four or more times a week 311 was in clubs or associations and 116 was in school but outside school hours while in the case of the girls these percentages stood at 177 and 61 respectively it is also to be noted that the majority of the girls never did any pa under professional supervision regarding the time spent doing pa statistically significant differences were observed in terms of gender for the different scenarios considered that is boys spent more time than girls doing pa outside school unsupervised outside school supervised and inschool supervised specifically four or more hours a week of pa were reported by 268 of the boys and 109 of the girls in the outside school unsupervised scenario 395 of the boys and 220 of the girls in the outside school supervised scenario and 189 of the boys and 90 of the girls in the inschool supervised scenario the majority of the adolescents regardless of gender and context spent less than 23 h a week doing pa considering overall pa the percentage of adolescents meeting who recommendations differed significantly across genders with that of the boys almost doubling that of the girls adolescents perceived levels of physical activity going on to analyse adolescents and their parents perceptions regarding the formers level of pa table 4 represents their characterisation in terms of gender and actual level of activity with regard to adolescents selfperception statistically significant differences were found between boys and girls meaning that the probability of a girl considering herself active was 27 times lower than that of a boy as for the parents perception both the mothers and the fathers showed statistically significant differences in their perceptions of their sons and daughters pa levels as such the probability of a girl being considered by her mother to be active was 136 times lower than that of a boy and when it was a father who made the assessment the probability of a girl being considered active was 152 times lower than that of a boy correspondence between adolescents actual and perceived physical activity levels when analysing the level of correspondence between actual pa levels and those perceived a poor level of concordance was observed on the part of the adolescents both overall and differentiated for the boys and the girls in more detail widespread overestimation was observed as 904 of the boys and 804 of the girls classified as sedentary according to their actual activity perceived themselves to be active on the other hand the percentages of active boys and girls who underestimated their pa level perceiving themselves to be sedentary were as low as 16 and 91 respectively on the part of the mothers the levels of concordance were also poor overall and specifically for the boys and the girls although to a lesser extent than among adolescents high percentages of overestimation were also present among mothers who misclassified their sedentary sons and daughters as active respectively 829 and 798 of the time the cases where mothers underestimated pa levels affected 103 and 166 of active boys and girls lastly on the part of the fathers the levels of concordance were poor again overall and in particular for the boys and for the girls when looking at the discrepancies in detail it was observed that fathers overestimated the pa level of their offspring in 845 and 812 of sedentary sons and daughters while underestimating it in 63 and 16 of active boys and girls insofar as the agreement between adolescents and their parents perceptions are concerned poor levels were observed both in the overall adolescentmother and adolescentfather comparisons as well as in the specific sonmother sonfather daughtermother and daughterfather comparisons lastly when establishing the level of correspondence between the parents perceptions a good concordance was found overall as well as separately with regard to sons and daughters discussion considering gender as a conditioning factor the aim of this study was to analyse the level of correspondence between the actual pa level of a group of adolescents and the perceptions held by adolescents themselves as well as their parents concerning said levels this analysis is substantiated by previous literature indicating that the discrepancies between the reality and the subjective perception of adolescents 12132223 and of their parents 25 26 27 could contribute to perpetuating unhealthy lifestyles in relation to the actual pa levels of the adolescents who took part in the study the results showed a high prevalence of sedentarism even more acute among the girls in keeping with what has been reported in literature in the last decade 1 2 3 considering the significant number of proven benefits that pa can provide for adolescents health 36 these figures represent a considerable threat to public health 37 and their perpetuation proves that the huge effort made by the main institutions and administrations internationally to develop policies promoting pa 3839 has been for now unsuccessful this underlines the need to continue exploring new research avenues that could serve as a guide and bring about changes in pa habits when we looked at adolescents selfperception of pa level in contrast with the actual levels commented on it was observed that among both the boys as well as the girls a large majority of the participants considered themselves to be active the strong tendency to overestimate pa was common to both genders although higher in the boys as 904 of them and 804 of the girls classified as sedentary in accordance with their actual activity level considered themselves to be active previous studies had already reported this overestimation phenomenon both in the child and adult populations although to a lesser extent as the percentage of sedentary participants who considered themselves active fell within the range of 389612 40 41 42 43 in turn among the few studies considering adolescent populations 1415 corder and colleagues found lower percentages of overestimation in the context of great britain than those reported here and also observed that this kind of misperception was slightly more prevalent in girls than in boys 14 to the contrary in a recent study with 2044 adolescent participants from urban areas of nine different european countries vanhelst et al 15 observed a much higher overall overestimation rate very similar to the one obtained in this study while they did not differentiate by gender even if based on this scant existing evidence it might be premature to try to establish a firm conclusion regarding the influence of gender on the tendency among adolescents to overestimate pa the results obtained herein would seem to be more in line with previous findings which have constantly recorded lower activity levels and more negative perceptions regarding said activity in girls 4445 the high variability observed in overestimation from one study to another might be explained by differences in the selection of participants andor the methodologies employed to assess actual pa further elaborating on these differences all previous research with adolescents have exhibited large sample sizes even though the exact number of participants recruited varied greatly from the 799 adolescents in the roots study 14 to both the 2044 in the helena study 15 and the 1697 in this study this different sample sizes had also resulted in a different age coverage between studies being the roots study 14 centred in early adolescence while both the helena 15 and this studies extended their coverages to late adolescence by linking the abovementioned differences in overestimation with the differences in age coverage it could be hypothesised that overestimation may grow through adolescence this hypothesis would be consistent with social desirability and social approval bias 46 and also with the important decline of pa during adolescence 4748 more importantly still the geographical areas considered and sampling procedures were not homogeneous either since the present study and the one by corder and colleagues 14 recruited their participants on a regional basis and by intentional nonprobabilistic methods while vanhelst et als study 15 had a broader european scope and employed random sampling methods and the participants in both this and the helena studies 15 came from urban areas while those in the roots study 14 came from urban and rural areas relating the differences observed in overestimation with the different environments considered it could be stated that overestimation is more prevalent among urban adolescents this claim is consistent with previous studies which found that adolescents living in rural areas had higher levels of pa 49 furthermore other studies 5051 have shown a greater amount of moderate to vigorous pa for urban adolescents at the weekends as a consequence of their participation in organized sports while lighter activities prevailed among their rural counterparts this greater intensity would predispose urban adolescents to increased overestimation since it has been suggested that when an individual perceives a bout of pa as intense tends to report more of it 52 with regard to the assessment of actual pa previous studies in adolescents 1415 used sophisticated automatic monitoring instruments while we used selfreporting procedures although accelerometers provide objective and more accurate measures and thus could be preferable they do not yet fully tackle heterogeneity in the assessments since they incorporate methodological issues related to calibration and comparability between devices 53 54 55 56 on the other hand in light of the results obtained the perception of parents would also appear to be affected by an overestimation bias being very similar to that observed for their daughters selfperception this discrepancy between parental perception and the actual pa levels of their children is in keeping with the results shown in previous studies 2557 and could be a limiting factor when reverting pa values in the young population 2627 furthermore when analysing parental perceptions in greater depth it was observed that in both the fathers and the mothers considerations cases of overestimation appeared more frequently with respect to the boys and in turn cases of underestimation appeared more often with respect to the girls which suggests that parents apply differentiated perception filters according to the gender of their offspring when assessing their pa level the analyses carried out in this research have also served to clarify that although a high overestimation of the pa of adolescents can be observed both in their own subjective evaluation and in that of their parents the level of agreement with regard to fathersondaughter and mothersondaughter is slight therefore it would be erroneous to assume that perception bias affects them in the same way on the other hand the level of agreement in perceptions with regard to fathermother was shown to be good considering this information as a whole in a consistent manner with the mediatory role attributed to previous knowledge in the formulation of subjective evaluations 56 it can be said that a generational effect could impact the perception of pa levels building strategies to foster an active and healthy lifestyle requires an objective and realistic diagnosis of the baseline situation and therefore the discrepancies observed between the adolescents actual and perceived pa levels represent a twofold problem on the one hand from the point of view of the adolescents the imbalances in their perception in relation to reality entail a decrease in their susceptibility to change their pa habits as people need to be aware of behavioural risk factors in order to want to change them and ultimately manage to do so 58 it could also be understood that people who overestimate their pa might disregard pa promotion campaigns as if these were intended only for inactive people thus will not respond to them 58 further still the lack of awareness of ones own achievements or failures when it comes to pa makes it easier for people to adopt an external locus of control attributing their situation to external forces instead of to their own decisions and abilities whereby more conformist and apathetic attitudes are established 59 with regard to the second problem area the influence that parents might have on their childrens pa levels has been classified in literature as important 286061 this affirmation is based on the fact that some parents abilities attitudes behaviours and value judgements 62 63 64 as well as the logistical support they provide 65 66 67 have been confirmed as prominent correlates of childrens pa levels consequently parents who overestimate their childrens pa levels may not provide the support network required to increase their childrens pa levels 262768 for a proper assessment of the evidence provided by this study it would appear necessary to describe its limitations this is a crosssectional analysis and the observed associations cannot be interpreted as causal relationships although the participants in the study constitute a large sample which represents families from different socioeconomic backgrounds they were chosen using a purposive nonprobability procedure and it was not possible to specifically characterize the socioeconomic groups that have been covered since socioeconomic data were not gathered consequently the risk of biased information being included cannot be completely ruled out furthermore to evaluate the correspondence between actual and perceived pa levels the former was determined through selfreporting procedures and although this approach coincides with that most commonly used in literature 2758 other recent studies have chosen to record pa levels by using accelerometers with potential implications insofar as the level of correspondence detected is concerned conclusions in conclusion most adolescents and their parents are incapable of correctly assessing the actual pa of the former more health education campaigns and awarenessraising interventions should be directed at both young people and parents since it seems that the general population lacks knowledge about the amount of pa that adolescents need to do to achieve a healthy lifestyle the gender of the adolescents influences their own assessments of pa and that of their parents with more negative perceptions regarding pa affecting to the girls compared with boys girls are also more inactive as a consequence the modification of pa behaviours among girls is a challenge with particular characteristics that calls for specific interventions future research should further study the pa awareness of adolescents and their mothers and specifically longitudinal studies are needed to further study the overestimation phenomenon and contributing factors and to characterise its evolution across life stages experimental designs are also required to test the efficacy of the different awarenessraising interventions carried out data availability statement the data presented in this study are available on request due to privacy restrictions informed consent statement informed consent was obtained from all subjects involved in the study

the imbalances between the actual physical activity pa of adolescents and the subjective perception both they and their parents have in this regard can play an important role in perpetuating inactive lifestyles the aim of this study is to analyse these discrepancies by considering gender as a conditioning factor the participants in the study were 1697 adolescents 1244 mothers and 1052 fathers in the educational communities of 26 secondary schools located in urban environments of the autonomous community of galicia spain with regard to actual physical activity a high prevalence of sedentarism 821 was revealed this being even more acute in girls 878 however the perceived levels of activity differed significantly from the actual ones with a clear general overestimation both by the adolescents and their parents when further exploring the data gender influences were also detected both in adolescent and parental perceptions since the high rates of overestimation in sedentary individuals were lower in girls and on the contrary the low rates of underestimation in active individuals were higher in girls moreover although the level of agreement between actual and perceived physical activity was low overall with cohens kappa values ranging from 0006 to 0047 the lowest values were observed in the case of girls in conclusion both the adolescents and their parents were incapable of correctly assessing the actual physical activity of the former so it seems that the general population lacks knowledge about the amount of physical activity that adolescents need to do to achieve a healthy lifestyle consequently it would be advisable to implement health education campaigns and awarenessraising interventions directed to young people as well as to their parents and in doing so gender must be considered by establishing distinct program designs in terms of this variable

introduction the modern contraceptive use has steadily increased over the past 15 years in ethiopia the contraceptive prevalence rate in 2000 was only 63 which accelerated to 35 in 2016 however utilization of longacting family planning methods is still low compared to the injectable contraceptives 12 according to the ethiopian demographic and health survey 2016 report the most commonly used contraceptive method for currently married women in ethiopia are injectable followed with implants the total fertility rate in ethiopia is 46 children per woman and 22 percent of currently married women have an unmet need for family planning shifting towards lafpm is the best strategy to ensure continuity of the family planning service in a country like ethiopia where there is high fertility rate and unmet need for family planning 2 longacting family planning methods can be permanent or reversible are methods that prevent pregnancy more than three years per application which include subdermal implants intrauterine devices and male and female sterilizations these methods have many advantages compared to other family planning methods they are convenient very effective longlasting reversible and costeffective in addition to these the effectiveness of lafpm are not dependent on compliance with taking the oral contraceptives daily or taking the regular injection at clinics therefore they prevent the failure rate due to the incorrect use 3 it is estimated that 1250 unwanted pregnancies would have prevented if 5000 oral contraceptive users were to switch to intrauterine device or implants over a period of years 4 different pocket primary studies were conducted in different parts of ethiopia to determine the factors associated with utilization of longacting family planning methods there are few comprehensive studies done in ethiopia about lafpm the study conducted by yonatan et al assessed the practice and intention to use longacting and permanent contraceptive methods among married women in ethiopia by using systematic review and metaanalysis 5 however this study did not address the factors associated with the utilization of longacting contraceptives in ethiopia therefore the aim of this study is to summarize the evidence of factors associated with lafpm utilization among married women in ethiopia the summarized evidence obtained from this study helps the concerned bodies to identify existing gaps and propose strategies to increase the utilization of longacting family planning methods in ethiopia methods protocol and registration this review was developed based on the prisma guideline 6 the review has been registered protocol by the international prospective register of systematic reviews eligibility criteria the study participants were married women of reproductive age in ethiopia they were from all socioeconomic status all ethnic groups and language this search included all published and unpublished observational studies on factors affecting longacting family planning service utilization among married women of reproductive age in ethiopia it included studies conducted before april 30 2018 and were written in the english language reviews commentaries editorial case seriesreport and patient stories were excluded from the systematic review process information source sand search strategy this systematic review and metaanalyses is conducted according to prisma guideline 6 the investigators retrieved information from electronic and nonelectronic database sources electronic database sources pubmed medline cinhal embase and popline were used to retrieve published articles nonelectronic sources used direct google search google scholar mednar and world cat log combination of search terms were used with boolean operators the search strategy included the use of titleabstract related to taken from the review questions nonelectronic sources used were combined with direct google search google scholar mednar and worldcat log in addition the investigators searched manually for grey literature and other relevant data sources such as email and unpublished thesispapers with planned dates of coverage the search strategy for cinhal is outlined in study selection all search articles were exported to the endnote x8 citation manager and duplicated studies were excluded then studies were screened through by careful reading of the title and abstract the three authors screened and evaluated studies independently the titles and abstracts of studies that clearly mentioned the outcomes of the review were considered for further evaluation to be included in the systematic review and metaanalysis then the fulltext of the studies were further evaluated based on objectives methods participantspopulation and key findings independently evaluated the quality of the studies against the checklist any discrepancy was resolved through discussion or through asking a third reviewer if consensus could not be reached the overall study selection process is presented using the prisma statement flow diagram 7 data collection process after the selection of appropriate articles data were extracted by two investigators independently using a data extraction template and presented through microsoft word 2016 the accuracy of the data extraction was verified by comparing the results with the data extraction by the second three investigators who independently extracted the data in a randomlyselected subset of papers the quantitative data and specific factors associated with utilization of longacting family planning methods were extracted from the included articles and summarized using microsoft excel 2016 for metaanalysis and synthesis data items the determinants of longacting family planning methods utilization were the main outcome variables which were achieved by this systematic review and metaanalysis the outcome variables were measured either by a direct report from the included studies or indirectly based on the statistics reported in the individual studies to quantify the outcome factors associated with longacting family planning methods utilization the investigators considered studies which reported as determinants of lafpm in their statistics differently and specifically womens knowledge level womens age womens education level husbands education level number of living children joint husbandwife discussion womens occupation husbands occupation the presence of media the residence of setting previous history of utilizing family planning method and others to comprehensively quantify the determinants the result was interpreted by odds ratio risk of bias in individual studies investigators critically evaluated the risk of bias from individual studies using the joanna briggs institute quality assessment tool for observational studies to minimize the risk of bias comprehensive searches were used and also included published unpublished facility or communitybased studies and thesis cooperative work of the authors was also critical in reducing bias in setting a schedule for the selection of articles based on the clear objectives and eligibility criteria deciding the quality of the article in regularly evaluating the review process and in extracting and compiling the data publication bias was explored using visual inspection of the funnel plot besides eggers regression test was carried out to check statistically symmetry of the funnel plot 23 synthesis of data data synthesis and statistical analysis were conducted using review manager version 535 a metaanalysis of observational studies was carried out based on the recommendations of the i 2 statistic described by higgins et al the investigators checked for potential publication bias through visual inspection of a funnel plot and eggers regression test publication bias was assumed for pvalues of less than 010 the results of the review were reported according to the prisma guidelines the findings of the included studies were first presented using a narrative synthesis and followed by metaanalysis chart result description of review studies a total of 327 articles were identified through the major medical and health electronic databases and other relevant sources from all identified studies 120 articles were removed due to duplication while 207 studies were reserved for further screening of these 176 were excluded after being screened according to titles and abstracts of the 31 remaining articles 16 studies were excluded due to inconsistency with inclusion criteria set for the review finally 15 studies which fulfilled the eligibility criteria were included for the systematic review and metaanalysis general characteristics and descriptions of the studies selected for the metaanalysis were outlined in factors associated with utilization of longacting family planning services the results of this review have shown many factors associated with longacting family planning services utilization in ethiopia significant associated factors were the womans knowledge level womans age womans education level husbands education level number of living children joint husbandwife discussion womans occupation husband occupation the presence of media the residence of setting and previous history of using family planning method the review also verified that income was not a significant predictor of longacting family planning services utilization womans knowledge level on family planning the level of womans knowledge was significantly associated with longacting family planning services utilization women who had inadequate knowledge on modern family planning were less likely to utilize long acting family planning services compared to women who had adequate knowledge or 029 95 ci 010 083 p 002 heterogeneity test indicated i 2 94 hence the random and fixed effect model was employed interchangeably for analysis in addition a sensitivity analysis was done and no change was illustrious in the overall odds ratio womans age the womans age was significantly associated with utilization of longacting family planning services the odds of utilizing long acting family planning services were low among women 15 to 34 years of age as compared to those aged between 35 to 49 years or 082 95 ci 053 093 p 001 heterogeneity test indicated i 2 87 hence random and fixed effect model was employed interchangeable for analysis but no significant change on heterogeneity in both models so the investigators assume to employ fixed effect model for analysis because there was a small change in overall summary results womans occupation status an odds ratio revealed that there was a significant association between womans occupation and utilization of longacting family planning services or 177 95 ci 129 243 p 00004 the nongovernment employed woman was 18 times more likely to have longacting family planning services as compared to governmentemployed woman husbands occupation status the results of the review showed statistically significant association between husbands occupation and womens utilization of longacting family planning services women whose husbands were nongovernment employees utilize lafp services than those whose husbands were government employees the heterogeneity test indicated an i 2 value of 15 womens education level the findings of the review indicated a significant association between womens education level and utilization of longacting family planning services women who have no formal education were 059 times less likely to utilize longacting family planning services as compared to women who had primary education and above or 05995 ci 040 087 p 0007 heterogeneity test indicated i 2 77 hence random effect model was assumed in the analysis sensitivity was done of analysis but did not bring significant change in the overall summary results of or husbands education level the results of the analysis indicated significant association between husbands education level and utilization of longacting family planning services a husband who had primary education and lesser was less likely to utilize longacting family planning services as compared to women who attended the secondary and above education or 053 95 ci 041 070 p 000001 joint husbandwife discussion the odds ratio of the analysis indicated a significant association between husbandwife discussion and utilization of longacting family planning services women who discussed about family planning methods with their partner utilize long acting family planning methods nearly two times than those who did not or 192 p 000001 the investigators considered a fixed effect model for the analysis because the i 2 value was 94 in addition a sensitivity analysis was done and no significant change was observed in the overall summary results of odds ratio monthly income there was no significant association between monthly income and utilization of longacting family the planning services or 168 95 ci 020 1401 p 063 heterogeneity test indicated i 2 98 hence random effect model was assumed during analysis presence of electronic media presence of electronic media was significantly associated with utilization of longacting family planning services women who do not have electronic media are less likely to utilize longacting family planning services as compared to women who have electronic media or 065 95 ci 053 079 p 00001 heterogeneity test indicated i 2 92 hence the fixedeffect model was assumed in the analysis to reduce the heterogeneity a sensitivity analysis was done and no change was recognized in the overall or in addition the investigators applied both models interchangeably and heterogeneities were the same number of living children a significant association was found in utilizing longacting family planning services between partners who have less than five living children and greater than or equal to five children but there was considerable heterogeneity found hence the fixedeffect model was assumed during analysis here the investigators employed both models interchangeably for this analysis but no heterogeneity change was found previous utilization of family planning methods this review demonstrated that there was no significant association between previous utilization of family planning methods and utilization of long acting family planning services in the random model however significant differences were found in the fixed effect model women who were not previously exposed to family planning use were 229folds more likely to utilize longacting family planning services as compared to women who had previous exposure but considerable heterogeneity was found too high between the studies in both models furthermore significant differences were found between the two groups in the fixed effect model residence of the setting the residence of women was significantly associated with utilization of longacting family planning services results of this review revealed that residence was one of the affecting factors that determined the utilization of longacting family planning services women from rural areas were less likely to use longacting family planning services than those from urban areas heterogeneity test indicated i 2 69 hence the fixedeffect model is assumed in this analysis because the confidence interval was very narrow the risk of publication bias of the study presented in funnel plots and discussion this comprehensive study provides vibrant information of overall factors that limit utilization of longacting family planning services in ethiopia in this review a total of 15 studies done both in the community and facilitybased setting in different regions of ethiopia were included from the included studies 10 were communitybased crosssectional studies 812 1417 20 three other studies were institutional based cross sectional studies 192122 the last two studies were unmatched casecontrol 1318 according to the ethiopian demographic and health survey conducted in 2016 the utilization of longacting family planning methods in ethiopia was very poor 2 the findings of this systematic review and metaanalysis revealed many factors that contribute to underutilization of lafpm among the leading factors the previous history of using family planning method was the main one women who had experience of using longacting family planning method was not encouraged to reuse it again 10112022 it might be related to cultural attitudes and religious beliefs fallacy thinking inadequate knowledge about lafpm as well as adverse effects contributing for not using lafpm again this may be associated with inadequately trained family planning counselor and do not provide the service all the times in all health institutions 24 attitudinal change and adequate information are the main factors that help mothers to be a user of longacting family planning in this regard secondly discussion with husband was the critical factor that limits longacting family planning services utilization 1013151621 this is because of husbands are not happy in using of longacting family planning because they want to have more children it needs extra work on the attitude change to alter this habit in addition being young adult women women with no formal education husbands education level below primary education having less than five living children being governmentemployed women womens husband being a government employee having no electronic media at home living in a rural area and low maternal knowledge about lafpm were among the factors contributing to the poor utilization of longacting family planning services in ethiopia 812 1417 1922 this is comparable with the review of the asia pacific region 25 strengths and limitations the investigators used extensive and comprehensive search strategies from multiple databases published unpublished studies and grey literature were included studies were evaluated for methodological quality using a standardized tool although the literature search was systematic and assessed all related studies within the desired scope it is possible that relevant publications eg publications reported in nonenglish language and local languages must have been missed studies with abstract were the only ones included this may affect the findings inclusiveness this study doesnt include any findings from benishangulgumuz region this may affect the generalization of this study but still the study will be applicable to all parts of ethiopia conclusion longacting family planning methods are underutilized in ethiopia due to lack of information and knowledge about them this leads women to develop a negative attitude towards these methods the socalled joint husbandwife discussion inhibits utilization of lafpms in addition being young adult women women with no formal education husbands education below primary level having less than five living children being governmentemployed women womens husband being a government employee not having electronic media at home and residing in a rural area were among the factors contributing additional files ethics approval and consent to participate not applicable competing interests the authors declared that have no competing interests

background even though the modern contraceptive use was improved in ethiopia the utilization of longacting family planning services is still low because of numerous factors the aim of this systematic review was to synthesize logical evidence about factors associated with long acting family planning service utilization in ethiopia methods the participants of the study were married women of reproductive age in ethiopia this search included all published and unpublished observational studies written in the english language conducted before april 30 2018 in ethiopia electronic and nonelectronic sources were used pubmed medline ebsco cinhal ebsco embase ebsco popline and the search engines like google google scholar mednar and world cat log were used the overall selected search results were 15 studies each study was evaluated using the joanna briggs institute quality assessment tool for observational studies data synthesis and statistical analysis were conducted using reviewmanagerversion535 results womens inadequate knowledge level or 029 95 ci 010 083 p 002 womens age between 15 and 34 or 082 95 ci 053 093 p 001 not having electronic media or 065 95 ci 053 079 p 00001 and women from rural area or 06595 ci050 081 p 00009 were less likely associated in the use of longacting family planning services the odds of utilizing long acting family planning methods were high among nongovernmentemployed women and husband or 177 95 ci 129 243 p 00004 or 169 95 ci 133 215 p 00001 respectively having no previous exposure to any modern family planning method or 229 95 ci 183 286 p 000001 and women having no discussion with husband or 192 95 ci 150 245 p 000001 were more likely associated in the utilization of longacting family planning services conclusion lack of information and knowledge having discussion with husband being women of younger age having less than five living children being governmentemployed women and husband not having electronic media and being residents in rural area were significant barriers for underutilization of long acting family planning methods in ethiopia hence the investigators suggest that key stakeholders should design interventions strategies to avert attitudinal cultural and informational barriers towards longacting family planning methods systematic review registration prospero 2018 crd42018096373

sense of affiliation based upon who one has and who one might potentially be and is informed by social interpersonal exchanges as lave and wenger observed learning throughout the lifespan always involves modifications of identity this notion of identity does not presume the isolable individual but rather identities that are unceasingly reshaped in transactions with others thus identity is particularly approachable through the study of naturally occurring discourse identity for the young children studied here is manifestly and significantly shaped through familial interactions if identities are shaped in stories about persons and experiences it becomes of interest to examine reciprocal processes of meaning making involved in story exchanges we argue that there are particular qualities of telephone interactions that promote the scaffolding of meaning making in narratives that adults offer children the first of these particular telephone discourse characteristics in its still most frequently found functional form is aural the restriction of other semiotic channels does not lead to a dilution of quality of experience but rather can enhance focus of attention for young children the telephone is different from their fundamental experience of facetoface communication about the hereandnow talking on the telephone demands recognition that the interlocutor is not physically present constraints on communicating with nonvocal strategies such as gesture as well as dependence on a physically shared environment necessitate explicit generally verbal linguistic strategies to achieve mutual intersubjective understanding although some of our other studies have compared telephonewith facetofacecommunications here we focus exclusively on telephone talk thus our study can be located within a perspective on talkininteraction mediated by a specific informationcommunication technology the study reported here is part of a multimethod research programme into childrens telephonemediated dialogues conducted over more than a decade our earlier studies revealed that children aged three and four recognize that their conversant is distant and show adaptive linguistic strategies to accommodate listeners needs that is they recontextualize their language usage we have shown this to be relevant specifically to emergent literacy processes for in schooled societies childrens discourse shows moves toward understanding the needs of distanced interlocutors and in consequence adopting appropriate linguistic strategies rather than see this as a move towards abstraction we agree with the challenge posed by bruner to such understandings of how academic learning can be characterized all learning is situated thus transforming knowledge or skills from one domain to another is a recontextualization process as lave asserts knowledge does not become abstract in the school setting as opposed to the authentic site of everyday life or vice versa rather it undergoes some transformation as it is suited to a new purpose we deem this transformational process to reflect learning and are particularly interested in the construction of shared communicative spaces whether in formal or informal settings our experimental studies have shown young children to enhance explicitness as required by the telephone channel when this shared communicative space is set up during pedagogic interventions for example in a series of quasiexperimental training studies one criterion task required the production of narratives describing wordless picture stories training tasks involved construction of collaborative knowledge between a child who had critical information and an adult who was more procedurally knowledgeable in such matters as figuring out how to cooperate to identify the quickest route to a relevant target persuade an interlocutor to provide a puppy with a good home or negotiate the choice of a video participants showed significant gains in complex verbal structures that enhanced oral and written narratives about the wordless picture books at posttest after the short intensive interventions utilizing the telephone in contrast to children who engaged in the same tasks facetoface adopting linguistic ethnography as described below the present research explores telephone interactions as constructed locally between young children and adult family members family members have a special role in facilitating communicative skilldevelopment with both cognitive and affective insights into their childrens worlds that they can call upon to scaffold their childs enhanced expressivity assuming that the childs effective recontextualization skills enhance expressivity we are particularly interested in the part the children themselves play in eliciting mutuality for meaning making there are many paths to listener awareness and a sturdy sense of self communicating in temporal synchrony but across space might usefully be considered a metacommunicative enrichment exploring the efficacy of distanced communications experienced in a wider range of cultural contexts allows us to determine whether such enhanced psycholinguistic awareness relates to identity development in the preand early school years over the telephone and constrained by lack of visual cues but not with synchronicity what strategies do children and their intimate relatives use to promote mutual understanding what impediments lie in the way of enhancing effective communications what characteristics afford space for asserting personal perspectives in such distanced exchanges will this context strengthen mutually satisfying expressivity what are some hallmarks of successful distanced exchanges between the children and their adult familial interlocutors an approach based on ethnography cannot provide full answers but can offer analysis of telling cases methodology we aim for ethnographically grounded analysis of communicative practices carefully transcribed texts were analyzed with focus on the situated practices that shape and are themselves shaped by discourses this necessitated the deploying techniques influenced by constraints on proximity in time and space to the data we recruited research participants in family settings where telephone interactions between a parent or grandparent and the child were to that date relatively uncommon but where volunteers viewed launching calls for our research a welcome opportunity for additional familial contact working with landline phones and audio recorders we telephonemediated narrative exchanges 8 provided the adults used a radio shack® bug in the ear pick up that attached to their telephone receivers as well as to the recorders a corpus of six to 12 fully transcribed telephone dialogues as collected in each family over approximately six to eight weeks constituted our core data face to face interviews were conducted with the adult participants at the beginning and end of the data collection period subsequently telephone discussions took place between the researchers and some participants during the process of analysis as specific interpretive questions arose participants described here were four pairs of lowerto middleincome family members see table 1 the constraints of the telephone channel with the absence of gestures eye contact nods frowns etc demand explicit verbal expression at a further level we use techniques from linguistic ethnography to enrich our understandings of interlocutors contributions to meaning making in this project our methods include o pre and post telephone and face to face discussions to aid interpretation o photography of sites and phenomena discussed to stimulate participants recall and aid interpretation o participation ie the first author was also a participant in the research thus participants reflections on the practices involved were an integral part of the process we note these interchanges not because they are normative nor are they extraordinary but rather because they are illustrative of a common pattern of striving for mutual coconstruction among the participant pairs we draw our examples from many telephonemediated narrative exchanges 10 possible instances to demonstrate the intimate intricacy of the interactions we draw more substantially on the data from one pair than the others in part to illustrate the diverse application of our methods within as well as between participants as appropriate to emergent issues the telephone dialogues we transcribed analyzed and mutually reflected upon exchanges that resonated with mutually constructed positive affect and attunement to the attunement of the other that is the kernel of intersubjectivity we show that the telephone channel afforded a degree of intersubjectivity attainment that is a central issue of psychosocial development the parents enabling meaningfully detailed accounts to take shape scaffolded many relational narratives of identity for example in extract 1 sam is at home with his father and his mother calls home from work to check in on the progress of their day sam reports that he was stung by an insect and his mothers enquiry about the stings healing progress leads fourandonehalfyearold sam 1 and his mother to a process of scientific knowledge integration sams personal strength and a possible identity yet even with such efforts at precision on the part of both parties endeavours to achieve intersubjectivity can run into considerable difficulties in the exchange studied next sam shares with his mother his summer day camp experience at a water park in vancouvers stanley park the first author first learnt during the postdata collection interview that some confusion had arisen during the exchange in conversation 2 below having discussed the text collaboratively and arrived at some ideas as to where the confusion arose it was decided to explore the discussed territories accompanied by a young assistant equipped with popsicle sticks to try out possible floating routes photographs were taken these sam it will like go down the waterfall mother oh sam i i i the popsicle stick i i put it at the start of that cause you know that little waterfall mother and did it go all the way out to the ocean then or did you stop it before it went out sams intensive focus on the conversation is demonstrated through his detection of a misunderstanding there being no egress to the ocean from the water park but what do you mean it went out to the ocean mother innocently tries to clarify did it go all the way out the stream and int into the into in touh whatever the harbour sam realizes that his mother and he are not referring to the same location and starts to probe no i mean within a broader family history to make connections between their understanding of their own experiences and others within a broader sociohistorical timeframe at this juncture mother was concerned not to alarm sam further by indicating that he was not that young but also not that old either referring to the uncles relationship to sams grandmother to cement the point and his relative age to sams mother who was quite old at the time of her uncles death from what she might have presumed was sams position in the interview later sams mother stated that she did not want to concern sam further but he perseveres with his empathetic response indicating that he was indeed a little discomfited by hearing of his uncles death here his mother agrees with his sentiments but does not belabor the issue at four years seven months sam was evidencing a developmentally common concern about death that his mother did not care to endorse and possibly was even a little concerned for her son herself in any case she changed the subject by moving on mother takes charge here and moves the conversation toward a telephone call closing yes i would be like that big doll and then a small doll standing on top of her head probably sarah oh 99 mother that would probably be my size we can see here very considerable focus by the child facilitated by her mother on precise categorisation and analogising with no gestures or other physical props the interlocutors language users as creative designers of meaning have sketched the scope and scale of their mutually constructed imagined portrait the nonvisual telephone channel may encourage not only a playing field where each interlocutor is required to listen carefully to the other to sustain the conversation but also through this enhance the childs verbalizing fine nuances of detail we observed the children reflecting their older family members discourses in both form and content possibly inspired by her experience of being quizzed by her mother sarah begins to query her she has just finished telling her mother that she will make mom a welcomehome card when she gets back from work and also give her a ball of crumpled paper mom indicates she would be delighted with a welcomehome card and would love a paper ball and asks sarah where she learned to make such a ball sarah says that she made it up herself and proceeds as follows in extract 5 mother seems taken aback by being asked if she had made up any stories herself mother of course i do i was thinking of you both today sarah you like looking at pictures that we make 71 mother i do indeed like that in this exchange we hear mother and daughter confirm warm mutual understanding and regard of course we would never be able to claim that such a conversation between the two could only have taken place on the telephone rather than facetoface but it is noteworthy that it moves far away from the hereandnow classically observed to be characteristic of conversation between young children and parents further sarah takes the lead in encouraging this interactive synchrony fiveyearold fumiko takes the opportunity in one of her early exchanges when her father seems to be pursuing her account of her own day perhaps a little persistently to take the interrogation initiative fumiko is at home with her grandfather when father calls from the autobody shop where he works fumiko mirrors her fathers friendly interrogation back to him he responds with an itemized list of the colours of cars fixed as requested we cannot tell from information available whether he actually did fix four each of a separate colour and why fumiko might think he fixed a blue one in this case our examination of the data leads to our not being able to raise such questions with the father as this analysis happened longer after the exchange for a subsequent discussion to yield supporting family memories or insights extract 6 fumiko conversation 2 119 father thats all you did at school that sounds like all you did 120 fumiko yeah and that thats all i did at home we can see at certain points fathers response to slight difficulties in the conversation caused by short or somewhat confusing responses is to attempt to deploy humour and that this is not necessarily well understood by fumiko however at the first time this happens fumikos reaction is to pose a question thus seizing back the initiative at a point of difficulty the second time her father offers a humorous response fumiko simply sounds confused listening to the tape it is apparent that fumiko is distracted by the approach of her grandfather which she explains to her father beyond the scope of this extract so despite slight difficulties the conversation is characterized by attempts on both sides to build upon the others responses and to coconstruct narratives whether about fathers or fumikos day at the same time everyday discourse including those undertaken on the telephone where each interlocutor cannot see the others environment is full of ambiguities and conversational opportunities not taken up learning to navigate these in a distanced disembodied channel is valuable in learning both about language usage and about interpersonal processes finally we look at the construction of grandmothergranddaughter identities that in just a few turns shapes and is shaped by two intertwined narratives one about their immediate present ie the dramatic day in question as well as a past christmas visit it has just been emilys first day in junior kindergarten also her grandmothers birthday we pick up the conversation after the first 140 turns that have mostly engaged in the childs report of her first day in preschool in extract 7 emily and her grandmother achieve mutuality over the time and distance of the longdistancetelephone communication not otherwise readily experienced because of their living 3000 kilometers apart their identities are coconstructed as stories about persons and experiences are shared their socioemotional connection keeps the exchange strongly positive and builds family feeling and identity via such narratives discussion and conclusions this study was initiated by a set of questions to which we can respond we observed the contributions young children play in establishing mutuality in joint meaning making they initiate joint and independent narratives they interrogate their interlocutors they use explicit descriptors to arrive effectively at knowledge integration they share positively affective interactions utilizing the constraints of the telephone as a prompt towards explicitness children and their family interlocutors use a wide range of descriptors and recontextualising techniques they establish common ground through coconstructing memories as narratives these communicative techniques afford space for the childs establishing mutuality of understanding in these distanced exchanges their mutual enjoyment clearly linked in the minds of participants to the context of the telephone channel was attested not only through the shared laughter and chuckles so frequent in the tapes but also through the interviews talking together on the telephone required pausing other activities to concentrate on the flow of talk negotiation and establishment of identities and extensions of the territories of familial exchanges are some of the hallmarks of these clearly satisfying distanced exchanges between children and their family self both emerges from and contributes to ongoing social interactions such that how we narrate our experiences with others shapes how we come to understand these experiences for ourselves… through describing explaining and evaluating our pasts in socially situated reminiscing we come to construct an interpretive framework for understanding both our experiences and ourselves our final questions have become what are the characteristics of these interchanges that make them so mutually satisfactory what creates a level playing field for exchanges of ideas experiences and reminiscences all interviewed parents spontaneously attested that the microgenetic experience of the telephone conversations was mutually enjoyable the requirement for listening and negotiating turns on each side fed into enhanced confidence in the childrens discourse skills the children demonstrated at an early age an expressive power of negotiated communicative space to have their emotional as well as cognitive needs met following other researchers including pontecorvo fasulo and sterponi fivush andperregaard we find value in examining instances of childparent exchanges that may superficially be considered merely part of the mundane minutiae of their daily rounds shatz argues persuasively that conversations bootstrap the interrelationships across such domains as language competency mental state understanding and selfreflection in a similar vein nelson emphasizes that word learning in its natural environment calls upon both culturally and socially contextualized processes these pragmatic situations enhance efficacious language usage we suggest that the socioemotional and cognitive aspects of the exchanges we have examined in the context of other research studies are enriched by a power shift toward enhanced voicing that can occur whilst talking on the telephone this supports the bidirectional perspective on socialization as demonstrated in parentchild conversations by pontecorvo fasuli sterponi involvement in such a project as this can in itself be facilitatory however we would argue this is an ethical component of much participatory research an ethnographic approach recognises its situated nature in the ongoing flow of daily life instantiating opportunities to demonstrate valued practices the exchanges between the pairs reported here were positive a linguistic ethnography approach is necessarily contingent on quality of interactions rather than imposing a strict set of procedures and this can have drawbacks we did receive a brief set of exchanges from one family where the interactions appeared less rich in this case subsequent discussions revealed that we had failed adequately to communicate our research aims and the ethos of telephonemediated narrative exchanges 35 the research the parents had thought they should remain as passive as possible in the exchanges in view of this failure on our part we feel it would be unethical to include any transcripts or analyses overall however we consider that our interpretations of the interactions reported were enhanced through the flexible deployment of a variety of methods of linguistic ethnography including interview and use of photography coconstructed in practice with our participants we would claim this is an appropriately participatory approach to this domain of inquiry in conclusion we support holland and laves dialogic view of the construction of subjectivity seeing the self as an orchestration of the practices of others participating in intergenerational discussions both of direct personal experiences and those with salience to immediate family history enables the children to develop their interpretive frameworks of understanding in such interactions they can construct nuanced perspectives on their own pasts including through reflections on others experiences such as rogoff characterizes as guided participation identities are constructed in and through relationships with significant others and we find that this is observable through multifaceted scrutiny of telephone interactions telephonemediated narrative exchanges 36 notes note 1 when discussing our interpretations with this family they communicated to us their desire for us to use the actual proper names as will be apparent below this helped us in that we can now report an interchange around proper names that would otherwise be difficult to include more importantly in this case we felt it would be unethical to refuse names in the other families are pseudonyms in line with the original participant information and consent forms deployed appendix for the sake of readability where an utterance begins with a word this is initial capitalized oleary for sensitive assistance in data collection and transcription and to the editor dr evan kidd and two anonymous reviewers for constructive comments

we explore here telephone interactions between young children and adult family members as contributing insights to the coconstruction of identities within both the nuclear and the extended family we deploy methods of linguistic ethnography to enrich the scope of interpreting our data beyond textual analysis our premise was that intimate relatives have knowledgeable appreciation of their childs affective and cognitive worlds that they can call upon to enhance emerging language use and narrative productions even in distanced communications talking over the telephone has the potential to scaffold childrens skills at offering clear cohesive communications and elaborated narratives examination of the corpora of four preschool children in interaction with a family member on the telephone showed them to employ extensive expressive power to negotiate considerable communicative space in having both emotional and cognitive needs met identities are coconstructed as stories about persons and experiences are shared

introduction symptoms of depression postpartum are a major health problem and affect hundreds of thousands of american mothers annually 1 2 3 4 experiencing these symptoms after childbirth has a negative effect on maternal quality of life and ability to function 56 in addition untreated postpartum depression has an adverse effect upon maternal infant interaction that negatively impact infants cognitive social and emotional development 7 8 9 10 the burden of postpartum depressive symptoms is especially high in lowincome black and latina women 31112 prior research by us and others suggest that a range of situational factors such as postpartum physical symptoms overload from daily demands and poor social support play a major role in the generation of depressive symptoms 3 13 14 15 based on these findings we created a behavioraleducational intervention aimed at reducing the frequency of depressive symptoms in postpartum mothers by preparing women about specific situational triggers of depressive symptoms bolstering their personal and social resources and suggesting specific actions to enhance their selfmanagement skills to buffer postpartum demands the intervention was aimed at prevention of depressive symptoms not treatment of major depression the primary outcome was the reduction of positive postpartum depression screens among black and latina mothers randomized to the intervention arm methods participants included 540 selfidentified black or african american and latina or hispanic postpartum mothers who delivered between april 2009 and march 2010 at a large tertiary innercity hospital located in east harlem in new york city the program for the protection of human subjects at mount sinai school of medicine approved this study the patient sample was identified through an electronic documentation system for the labor and delivery unit eligible participants were black or african american or latina or hispanic aged 18 years or older had infants with birth weights of 2500 grams or higher and 5minute apgar scores of 7 or greater maternal race maternal ethnicity maternal age infant apgar scores and infant birth weight are contained in the electronic system to insure eligibility two bilingual clinical research coordinators asked additional questions of mothers who met initial requirements from the electronic record final eligible mothers selfidentified as black or african american or latina or hispanic spoke english or spanish and had a working telephone the clinical research coordinators approached mothers between their delivery day and postpartum day 2 patients were assigned a number between 1 and 20 in order of delivery date and time and then approached in the order set by that days list of random numbers generated by the project statistician our study team recruited between 12 and 14 patients per week after obtaining informed written consent enrolled participants completed a 20 minute baseline inhospital survey patients were randomized to conditions in four stages the statistician carried out randomization using a computerized procedure that used a random number generator to assign participants to intervention or enhanced usual care at the end of each stage the randomization allocation could be potentially adjusted based on important covariates no adjustment to randomization was initiated at any time the research clinical coordinators were blinded to study arm assignment patients randomized to the intervention arm were given a 2step behavioral educational intervention the inhospital component of the intervention involved a 15minute in hospital review of a patient education pamphlet and partner summary sheet by the mother with a masterstrained bilingual social worker the pamphlet represented each potential trigger of depressive symptoms as a normal aspect of the postpartum experience and provided specific suggestions for management for example the prevalence of moderate or heavy vaginal bleeding immediately postpartum was depicted by 8 of 10 female silhouettes colored red only 1 of 10 was red 3 months post delivery simple to do statements were listed between the two rows of figures postpartum and 3 month rates and intermediate to do lists also were provided for csection site pain episiotomy site pain urinary incontinence breast pain back pain headaches hair loss hemorrhoids feeling sad and bluedepressive symptoms and infant colic a separate page was dedicated to social support and helpful organizations were listed the partner summary sheet spelled out the typical pattern of experience for mothers postpartum ie it was designed to normalize the feelings and behaviors experienced and enacted by most mothers postpartum and stressed the importance of social support for the patient the social worker reviewed the patient education pamphlet and partner summary sheet with the patient during her postpartum hospital stay and answered questions the second and final component of the intervention was a twoweek post delivery call in which the social worker assessed patients symptoms skills in symptom management and other needs the to do lists to help alleviate symptoms were reviewed when needed and patient and social worker created action plans to address current needs including accessing community resources fidelity of the intervention was maintained by repeated training and review of scripts for both the in person inhospital and telephone components of the intervention approximately 5 of both inhospital sessions and twoweek telephone needs assessment were observed by a physician or project manager on the team the content of the intervention was based on responses from our prior studies focus groups with postpartum mothers obstetricians psychiatrists social workers and our community advisory board the intervention was pilot tested with 50 diverse postpartum mothers and revised based on feedback from pilot study participants the results from two focus groups conducted with black and latina postpartum mothers and feedback from community advisory board members content pictures wording and length were revised according to input from these sources materials were translated to spanish and back translated for accuracy and consistency of meaning enhanced usual care patients received routine postpartum hospital education to insure equivalent contact patients assigned to enhanced usual care control received a twoweek post delivery call to inform them of future surveys and a list of healthrelated and community resources was mailed to them interviewers were blinded to study arm assignment all study participants were interviewed by phone at 3weeks 3months and at 6months to assess depressive symptoms and contributing and buffering factors postnatal depressive symptoms were assessed using the 10item edinburgh postnatal depression scale the epds is a common measure used in research to assess symptoms of postpartum depression in both treatment and prevention trials and has been validated in many postpartum populations and different languages 16 17 18 19 20 21 22 23 24 25 26 27 28 29 the recommended cutoff score of 10 or greater has sensitivities of 059081 and specificities ranged from 077088 for major and minor depression 2 the patient health questionnaire9 was also administered and a comparison was made between the epds and phq9 scores over time in a secondary analysis survey items also included questions on sociodemographics clinical characteristics such as antepartum complications comorbid conditions past depression history anxiety social support and healthcare factors medical charts were reviewed for parity delivery type insurance past medical history maternal complications delivery complications and infant outcomes after patients were consented and completed the baseline survey women reporting high levels of depressive symptoms were referred for inpatient psychiatric assessment and possible treatment to address risk over time all mothers including those referred for inpatient assessment at baseline were retained in the study and mothers who reported high levels of depressive or suicidal symptoms at any time point were referred for psychiatric assessmenttreatment analyses excluding mothers referred for baseline psychiatric intervention during hospitalization were planned apriori sample size was powered to detect a clinically meaningful difference in reduction of symptoms of postpartum depression 3 weeks post randomization for women in the intervention arm in comparison with women in enhanced usual care assuming that 46 of black and latina women would report depressive symptoms in enhanced usual care our recruitment target of 460 patients met 90 power based on a twosided 005 level chisquared test to detect a clinically meaningful 15 reduction in depressive symptoms to allow for decreased power due to patient loss at followup we planned to enroll 540 participants data were collected inperson at baseline and by telephone during followup interviews by bilingual clinical research coordinators blinded to intervention status all data were entered directly into a laptop computerized instrument linked to a microsoft access database participants in the intervention arm and enhanced usual care were compared at baseline on demographic and clinical characteristics using ttests and their nonparametric equivalents chisquare tests as appropriate group differences were summarized by 95 confidence interval estimates overall study attrition rate was low and equivalent across treatment groups the amount of missing data for our primary outcome measure epds was low at 3weeks 3months and six months and similar between groups at each time point the primary analysis examined the efficacy of the intervention in reducing the likelihood of positive postpartum depression screens planned subgroup analyses examined whether the intervention reduced the likelihood of a positive depression screen among mothers who scored below 13 on the epds and were therefore not referred for baseline psychiatric intervention prior to conducting these analyses missing data were imputed ie estimated using a multiple imputation approach 30 data were assumed to be missing at random as baseline characteristics for those missing outcomes at 3weeks were very similar to those for whom outcomes were available at 3weeks with the only significant differences being that those with missing outcomes were more likely to be born in the us to speak english and have past history of depression the regression models used baseline epds scores and past depression history five complete data sets were created using multiple imputations and analyzed and combined using the mianalyze procedure in sas the final parameter estimate and the associated standard errors account for both within and betweenimputation variance as imputation yielded similar results to the observed trial results both for the total sample and the subgroup analysis including the mothers not referred for intervention we present observed results the more conservative estimate of effect for both the logistic regression analyses tested the effect of the intervention on positive depression screens at 3 weeks 3 months and 6 months postpartum we conducted adjusted analyses for the subgroup of mothers not referred for treatment at baseline we included independent variables that were associated with a positive depression screen at baseline to assess change over time across groups for the primary outcome mixedeffects models using maximum likelihood procedures were employed significance level of 005 was used for the primary outcome of postpartum depression and the final model was adjusted for baseline depression screen results of the 5968 deliveries over the study period 1528 met the initial eligibility criteria a total of 668 of the 1528 eligible mothers were approached in hospital and reviewed the study consent form of the 668 mothers 540 completed the consent process and were enrolled in the trial and 128 mothers declined to participate there were no significant differences between those who consented or declined in mean age insurance status primary language or delivery route latina mothers were more likely to decline than black mothers of the 270 mothers randomized to the intervention arm 261 received the intervention in hospital though 9 mothers were discharged before the social worker could meet with them those 9 patients were sent the education materials and the social worker reviewed the educational materials over the phone ninetythree percent of the intervention group and 93 of the control group were successfully reached for the 2week calls of the 540 enrolled patients 9 patients withdrew over the 6month study period completion rates for the followup interviews were 87 at 3weeks 89 at 3months and 78 at 6months followup was equivalent for intervention and control at 3weeks 3months and 6months postpartum there were no baseline differences in rates of positive depression screens between women lost to followup verses those included in the analyses at 3weeks at 3 months or at 6months the overall mean age of enrolled participants was 28 62 were latina and 38 were black 63 had medicaid insurance 56 earned ≤ 30000 annually 35 were foreign born and 21 spoke spanish as their primary language baseline characteristics of the intervention and control groups are described in table 1 there were no clinically important differences between the two groups at baseline except that comorbid conditions were more prevalent among the controls than intervention group the mean epds scores at baseline were 42 in the intervention group and 45 in the control group fortyfive mothers had high levels of depressive symptoms at baseline and were referred for psychiatric assessment possible treatment while in the hospital in the intentiontotreat analysis mothers in the intervention arm were less likely to screen positive for depression than mothers in the control arm at 3 weeks 88 vs 153 p03 respectively at 3months 84 vs 132 p09 respectively and at 6months 89 vs137 p11 respectively repeated measure analysis showed that the intervention was protective against a positive depression screen for up to 6months of follow up subgroup analyses were planned to estimate the effect of the intervention on mothers not referred for baseline psychiatric assessmenttreatment as this intervention was aimed at prevention not treatment of mothers with severe depressive symptoms analyses of the 495 mothers who did not receive an additional psychiatric intervention at baseline showed that mothers in the intervention arm were less likely to screen positive for depression than mothers in the control arm at 3weeks 3months and 6months see table 2 in multivariable analyses controlling for baseline depression scores past history of depression country of birth language social support and presence of comorbid clinical condition mothers in the intervention arm vs controls were less likely to screen positive for depression at 3weeks adjusted or 037 at 3months adjusted or045 and at 6months adjusted or 051 repeated measure analysis showed that the intervention was protective against a positive depression screen score for up to 6months of follow up among mothers not referred for psychiatric intervention at baseline among the 45 mothers referred for psychiatric assessmenttreatment at baseline there was no significant difference between intervention and control in rates of positive depression screens at 3weeks 3months and at 6months postpartum discussion the results of this trial suggest that a behaviorally focused educational intervention delivered in the obstetric setting has the potential to reduce the likelihood of a positive depression screen among black and latina mothers our intervention designed to address modifiable situational factors for the prevention of postpartum depression was successful in buffering the occurrence of such symptoms both intenttotreat analysis and subgroup analysis of mothers not referred for psychiatric intervention at baseline demonstrated that mothers randomly assigned to the intervention were less likely to screen positive for depression during the sixmonth followup period than mothers in enhanced usual care we believe the significantly lower odds of reporting symptoms indicating a positive screen for depression during the six months of followup as compared with controls is clinically important as many of the detrimental effects of postpartum depression impact mothers infants and families during this crucial period given our success in recruiting 540 black and latina mothers with only a 19 refusal rate our results are likely representative for mothers from similar racial and socioeconomic backgrounds the effect of our intervention appeared somewhat stronger among the 495 mothers not referred for psychiatric assessment and possible treatment at baseline as the intervention was designed to prevent and not to treat depressive symptoms and those referred were given a potentially stronger personalized assessmenttreatment a behavioral education intervention was unlikely to provide added benefit for ethical reasons we decided to continue to include assess and refer for formal assessment and treatment any mother who exceeded the highest cut point at any point in time however our data do suggest that in settings where mothers are not screened prior to hospital discharge the evidence suggests that this intervention shows promise for reducing positive depression screens in the early postpartum period our results suggest that one can address and modify the factors that have been reported to be correlated with and hypothesized to elicit postpartum depressive symptoms 315 our intervention aimed to increase mothers knowledge about specific triggers of postpartum depressive symptoms by presenting visual displays of the number of mothers likely to experience each symptom providing simple to dos to manage each symptom and was followed by a visual display of the number of mothers likely to still experience these factors at 3 months the visual representations made clear that these factors were normal manageable with behavioral strategies and tactics and likely remediated in a defined time frame it also emphasized the importance of social support finally specific instructions specified to call ones physician in the event that symptoms did not resolve or worsened and provided a list of existing healthrelated community services although our study is one of few trials that have successfully reduced postpartum depressive symptoms among black and latina mothers our results are consistent with a large cochrane review which demonstrated that psychosocial interventions to prevent postpartum depression are more likely to be successful if they are individually based initiated postnatal and conducted by a health professional 31 psychoeducational interventions may be especially helpful in the setting of prevention because they avoid some of the stigma associated with mental illness which is of particular importance for many black and latina communities there were limitations with this trial first the rate of positive depressive symptom screens was much lower than rates previously published in the literature on perinatal women of color 332 previous studies have rates as high as 50 depending on the screening instrument used and population studied 34 given that the prevalence of depressive symptoms was much lower than expected our power to detect a meaningful difference was extremely limited in this study despite the low prevalence of depressive symptoms in this patient sample the intervention was found to be effective second we used a depression screening instrument rather than a formal structured interview to diagnose depression our intervention was implemented in an obstetrics setting where formal assessments are often too burdensome to perform further positive screens for depression whether or not they are associated with diagnosis of major depressive disorder are associated with multiple negative outcomes for mothers and infants 351332 and finally our trial was implemented in one institution which limits the generalizability of our results however the institution serves a very racially ethnically and socioeconomically diverse population in a large urban city future research should examine the effect of this intervention more broadly and this intervention has the potential to be adapted to an outpatient setting a behavioral educational intervention reviewed and modified by mothers and community members delivered to black and latina postpartum mothers successfully reduced the likelihood of a positive depression screen in a large urban hospital setting this first step intervention focuses on educating and preparing mothers for postpartum experiences and increasing their ability to cope with postpartum demands although this intervention does not replace treatment for major depression and may be of limited benefit for those with major depression it successfully reduced positive postpartum depression screens among lowincome mothers of color in this study it is important to note that the effect during the first sixmonths postpartum would likely benefit infant mother and family participants flow through study

objectiveto estimate the effectiveness of a behavioral educational intervention to reduce postpartum depressive symptoms among minority motherswe recruited 540 selfidentified black or african american and latina or hispanic mothers during their postpartum hospital stay and randomized them to receive a behavioral educational intervention or enhanced usual care the intervention arm received a twostep behavioral educational intervention that prepares and educates mothers about modifiable factors associated with symptoms of postpartum depression physical symptoms low social support low selfefficacy and infant factors bolsters social support enhances management skills and increases participants access to resources enhanced usual care participants received a list of community resources and received a 2week control call participants were surveyed prior to randomization 3weeks 3months and 6months later to assess depressive symptoms the primary outcome depression was assessed using the edinburgh postnatal depression scale score of 10 or greater resultspositive depression screens were less common among intervention vs enhanced usual care posthospitalization 3weeks 88 vs 153 p03 3months 84 vs 1324 p

introduction rural minority populations are disproportionately affected by overweight and obesity and may benefit from lifestyle modification programs that are tailored to meet their unique needs obesity interventions commonly use goal setting as a behavior change strategy however few have investigated the specific contribution of goal setting to behavior change andor identified the mechanisms by which goal setting may have an impact on behavior change furthermore studies have not examined goal setting processes among racialethnic minorities using data from an obesity intervention for predominately minority women in rural north carolina this study sought to examine whether intervention participation resulted in working on goals and using goal setting strategies which in turn affected health behavior outcomes it also examined racialethnic group differences in working on goals and use of goal setting strategies methods data came from a communitybased participatory research project to address obesity among lowincome predominately minority women in rural north carolina a quasiexperimental intervention design was used participants included 485 women aged 18 years and over intervention participants received health information and goal setting support through group meetings and tailored newsletters comparison participants received newsletters on topics unrelated to obesity surveys assessed physical activity fruit and vegetable intake goalrelated stage of change and use of goal setting strategies chi squared statistics were used to assess intervention group differences in changes in goalrelated stage of change and use of goal setting strategies as well as racialethnic group differences in stage of change and use of goal setting strategies at baseline the causal steps approach of baron and kenny was used to assess mediation results intervention compared to comparison participants were more likely to move from contemplation to actionmaintenance for the goals of improving diet and physical activity 56 intervention introduction overweight and obesity are associated with the leading causes of morbidity and mortality 12 and have significant social and economic impacts 2 3 4 racialethnic minorities are disproportionately affected by overweight and obesity according to the 20092010 national health and nutrition examination survey 349 of nonhispanic white 496 of nonhispanic black 379 of hispanic and 396 of mexican american adults were obese at 586 nonhispanic black women had the highest obesity prevalence of all racialethnic and gender groups 5 rural populations also have a higher prevalence of obesity according to nhanes data from 20052008 396 of rural adults were obese compared to 334 of urban adults 6 these data suggest that minorities and rural populations are in particular need of effective intervention programs and may benefit from programs specifically designed for their communities there is a proliferation of research on behavior change strategies for weight management in the usa studies have addressed a number of behaviors that help individuals lose weight and sustain weight loss such as increased fruit and vegetable consumption 7 8 9 decreased fast food consumption 10 and increased physical activity 1112 however many intervention studies use multiple strategies to modify behavior and therefore little is known about specific intervention strategies and the processes by which they lead to healthrelated behavior changes goal setting is one strategy that has been used in intervention research to change healthrelated behaviors 13 and is often incorporated into obesity interventions goalsetting theory developed by locke and latham from the field of organizational psychology 14 provides evidence for effective goalsetting strategies that may be applicable to health behavior change goal setting has been shown to be equally effective whether the goals are selfset collaboratively set or prescribed by someone else 1516 furthermore specific and challenging goals are more likely than vague goals to lead to success 15 monitoring goalrelated progress either through selfmonitoring or feedback from an external source is an important moderator of goal achievement because it provides information necessary for adjusting strategies or level of effort 1517 goal commitment is also an important moderator of goal achievement commitment is greater if the goal is important to the person and importance can be enhanced by validation and support of a behavior by leaders and by public commitment to a goal selfefficacy can also enhance commitment by providing the confidence needed to progress to goal achievement 151618 goal setting is also addressed in social cognitive theory which emphasizes the importance of setting achievable goals as a way to increase selfefficacy leading to behavior change 19 the literature on the most effective approaches to incorporating goal setting into obesity interventions is somewhat limited nonetheless research on goal setting to address weight physical activity and diet has also shown that setting specific goals feedback through selfmonitoring and commitment are important for goal achievement 17 20 21 22 23 however there is some evidence that setting more challenging goals does not lead to greater success for weight loss 24 a review of goal setting for diet and physical activity found that interventions that fully support the process of goal setting include content that is primarily focused on goal setting and attainment and they incorporate various strategies for achieving goals such as feedback contracting barriers counseling and skills development and these approaches generally result in behavior change 25 there are several gaps in the knowledge of the best way to utilize goal setting in obesity interventions first the goalsetting component of weightcontrol interventions is typically neither well described nor evaluated 17 in many interventions goal setting is included as one of many intervention strategies making its specific contribution to behavior change difficult to identify second there is not an established approach for measuring strategies for goal setting and other mechanisms by which goal setting may have an impact on behavior change 20 mediation analysis has been useful for defining the contribution of different intervention components and evaluating an interventions theoretical underpinnings by testing the proposed process by which change is expected to occur 26 however this approach has not been used to understand goal setting in obesity interventions third there is a need for studies that examine goal setting among racial and ethnic minorities 17 particularly women in rural lowincome communities that are disproportionately affected by obesity some obesity interventions targeting minority women have incorporated goal setting 27 28 29 but these occur predominately in urban areas and have not evaluated racialethnic differences in goal setting that may contribute to the knowledge base about optimal processes and procedures for goal setting among different racialethnic groups investigating goalsetting patterns in these populations may provide useful information for developing culturally appropriate sustainable behavior change strategies and identifying specific barriers and challenges interventions can address to help reduce obesityrelated health disparities to address the gaps in the literature on goal setting for obesity interventions this study used data from an obesity intervention for rural predominately minority women to examine the goalsetting component of the intervention the primary objective was to examine the mechanisms by which goal setting affected behavior change the specific aims were to • examine whether intervention group participants showed a greater increase in working on goals and use of goalsetting strategies than comparison group participants • assess whether changes in working on goals and use of goalsetting strategies mediated the association between intervention participation and health behavior outcomes in order to address the lack of research on goal setting among racialethnic minorities and to identify racial differences that may help tailor the goalsetting component of future interventions for this population a secondary objective was to examine racialethnic group differences in working on goals at baseline changes in working on goals from baseline to followup and use of goalsetting strategies hope works used a quasiexperimental intervention design that included two arms the hope works intervention group and a comparison group women in the intervention group were recruited through the existing social networks of community women circle leaders who were trained to lead hope circles of women through the intervention comparison group women were recruited through community events and local media eligibility criteria included being 18 years or older not pregnant and fluent in english or spanish participants were not required to be obese community partners were not comfortable excluding nonobese women from the program due to the importance of maintaining a trusting and positive relationship with community partners involved in this cbpr study being obese was removed from the exclusion criteria nonetheless more than 80 of participants had a body mass index ≥ 25 the final analysis sample included 485 participants the prestudy calculation of required sample size indicated that 500 women should be recruited allowing for attrition to 400 at followup a detailed description of the study design and sample is published elsewhere 30 methods design and sample intervention participants in the hope works intervention attended biweekly group meetings for 6 months the meetings were led by trained circle leaders who followed a curriculum addressing the topics of healthy eating physical activity weight control stress management education and job skills the circles provided social support taught strategies for weight management and helped women set and make progress towards reaching health and life goals health goals included having a healthier diet becoming more physically active and working on weight control life goals addressed topics such as employment education job skills and small business development which community members had identified as important for addressing their concerns about economic security participants received monthly newsletters that were tailored to variables from the baseline survey and provided individualized information and strategies for achieving behavior changes related to their goals goal setting was a core component of the circle meetings at the second meeting women wrote down one health goal and one life goal to work on during the program one circle session was devoted to teaching the women how to create smart goals each woman was paired with a goal buddy or a partner with whom she would check in at the beginning of each circle meeting together they monitored their progress and brainstormed methods to overcome barriers to obtaining their goals group discussions also focused on ways to overcome barriers to reaching goals the newsletters reviewed strategies for effective goal setting and were tailored to the participants stage of change for each goal comparison women received mailed monthly newsletters on topics such as back pain sexually transmitted disease and injury prevention for 6 months these newsletters were not tailored and did not address goal setting measures selfadministered surveys were conducted at baseline and 6month followup demographic data were collected on age raceethnicity education and income physical activity was measured using a modification of the physical activity questions from the behavioral risk factor surveillance system 32 participants were asked whether they did any moderate physical activity if they answered yes they were asked to report on frequency and duration participants responded to the same series of questions on vigorous physical activity categorical responses were used instead of openended responses based on survey pretesting a summary measure was derived from the data assessing total minutes of moderate and vigorous physical activity per week fruit and vegetable intake was assessed using six questions that were modified from the brfss questions on fruit and vegetable intake 32 the questions assessed consumption of fruit fruit juices and four categories of vegetables as with the physical activity questions pretesting indicated that categorical responses be used instead of openended responses the questions were used to calculate total servings of fruit and vegetables per week height and weight data were collected to calculate bmi but this outcome was not included in this analysis because it was the focus of another study manuscript 30 several measures were developed to evaluate the goalsetting component of the intervention to assess whether participants were working on goals related to the intervention content a series of questions measured goalrelated stage of change in response to several interventionrelated goals each participant was asked whether this was not one of her goals she wanted to work on the goal but hadnt yet started or she was actively pursuing the goal at followup participants were asked to specify if they had been actively pursuing the goal in the past 6 months or 6 months or more to assess the use of goalsetting strategies participants were asked how often they used the following strategies making sure the goal is achievable writing down the goal telling someone about the goal breaking the goal into small steps planning things to do to reach the goal and setting a deadline for reaching the goal the response options were none a little some and a lot given the participatory nature of this cbpr project all survey questions were developed with extensive input from community partners and pretested analysis analyses were conducted using sas v92 descriptive statistics including means and percentages were computed to describe the demographic characteristics of the study population the intervention and comparison groups were compared on demographic characteristics using χ 2 tests for categorical variables and ttests for continuous variables the number and percentage of participants in the three categories for goalrelated stage of change and the two categories for goalsetting strategies at baseline were calculated a χ 2 statistic was computed to examine differences between the intervention and comparison groups in changes in goalrelated stage of change from baseline to followup for this analysis the sample included only participants who completed both the baseline and the followup surveys a χ 2 statistic was also computed to examine intervention group differences in goalsetting strategies from baseline to followup raoscott χ 2 tests were used to assess racialethnic group differences in stage of change and use of goalsetting strategies at baseline all tests were adjusted for clustering by circle in the intervention arm and used a significance level of 005 for the mediation analysis the causal steps approach of baron and kenny was used 3334 to test the hypothesized relationships using generalized linear mixed models that took into account clustering in the intervention group more specifically the a path was estimated to assess the relationship between study group and the hypothesized mediator the b path was estimated to assess the relationship between the hypothesized mediator and each outcome and the c path was assessed to examine the relationship between the study group and each outcome if all three tests were significant the indirect effect and its confidence intervals were estimated ethics approval this study was approved by the institutional review board at the university of north carolina at chapel hill results the demographic characteristics of the study population are presented in table 1 the participants had a mean age of 475±143 years twentyseven per cent of the participants were white 63 were black and 10 were from other racial and ethnic groups less than 3 of the population was hispanic or latino the other category included 30 native americans 2 asians and 16 people of mixed race participants had an average of 139±242 years of education although the majority had an income between us 20000 and us 50000 onethird had an annual household income of less than us 20000 the average bmi was 334 baseline demographic characteristics by study group reveal that women in the intervention group had less education less income and higher bmi than women in the comparison group the degree to which participants were working on interventionrelated goals at baseline is summarized in table 2 for the goals of eating a healthier diet increasing physical activity and working toward a healthier weight the majority of participants were in either the contemplation or action stage of change for the goals of getting a better education owning a home starting a business improving job skills and financial security responses were more evenly distributed across the three stages of change however nearly twothirds of participants were in the precontemplation stage of change for the goal of starting a business analysis of baseline racialethnic group differences showed a greater percentage of blacks than whites in the contemplation and action categories for the goals of getting a better education owning a home starting a business and improving job skills the results of χ 2 tests examining intervention and comparison group differences in progression in goalrelated stage of change from contemplation to actionmaintenance are presented in table 3 for all participants significant group differences were evident for the goals of eating a healthier diet and increasing physical activity participants in the intervention group were more likely to move from contemplation at baseline to actionmaintenance at followup on the goal of having a healthier diet than participants in the comparison group this difference was not statistically significant for black participants the same trend was observed for the goal of increasing physical activity this was evident for both racialethnic groups there was a similar trend for the goal of working toward a healthier weight but this was only statistically significant for black participants ttests were conducted to examine intervention group differences in progression in stages of change from precontemplation to a higher category but group differences were not found table 4 depicts the use of goalsetting strategies by study participants at baseline the most commonly used strategy was making sure that the goal is reachable which was practised by 79 of participants some or a lot of the time the χ 2 test assessing changes in use of these strategies from baseline to followup revealed no difference by intervention and comparison group black and white participants were similar in their use of the strategies with the exception of writing down the goal which was more often used by black participants the mediation analysis tested the progression in goalrelated stage of change as a mediator of the intervention impact on health behavior outcomes results revealed that for fruit and vegetable intake the proportion of participants reporting movement from contemplation to actionmaintenance during the study period was significantly larger in the intervention group than in the comparison group however there was no difference between study groups in fruit and vegetable intake for physical activity a significantly larger proportion of participants in the intervention group reported movement from contemplation to actionmaintenance for the goal of increasing physical activity than in the comparison group intervention group participants engaged in significantly more minutes of physical activity per week than comparison group participants furthermore those who reported moving from contemplation to actionmaintenance reported more physical activity minutes per week compared to those not reporting this change indicating that the effect of the intervention on physical activity appeared to be mediated by progression in goalrelated stage of change the mediated effect was estimated to be 34±31 minutesweek the same trends were observed when black and white participants were examined separately discussion this study examined the goalsetting component of an obesity intervention for lowincome predominately minority women in rural north carolina the results support the authors hypothesis that intervention participants over the course of the study period revealed greater progression in goalrelated stage of change participants in the intervention compared to the comparison group were more likely to move from contemplation to actionmaintenance for the goals of eating a healthier diet and increasing physical activity there were however no significant differences between the intervention and comparison group for progression in nonhealthrelated goals such as getting a better education and improving job skills a larger proportion of participants were in the contemplation or action stage of change at baseline for health goals as opposed to life goals suggesting that participants were more likely to make progress on goals that they were focused on at the start of the program this study demonstrates the importance of readiness in terms of setting and reaching goals for behavior change while significant intervention group differences were found for progression from contemplation to a higher category for the goals of eating a healthier diet and increasing physical activity differences were not found for movement from precontemplation to a higher category for any of the goals this suggests that the intervention was most effective at helping women work on their goals if they were already interested in working on that particular goal this is supported by research indicating that recognizing a need for change is a critical step in successful goal setting 17 one would expect women in contemplation were more aware of the need for change than women in precontemplation it is also possible that those who were already contemplating working on a goal were more committed to it which could also affect goal progression 15 this finding highlights the importance of allowing individuals to select their own goals and of providing strategies such as the smart goal approach to help them achieve the goal further work should focus on strategies for motivating those in the precontemplation stage of change perhaps using techniques such as motivational interviewing 35 the analysis of goalsetting strategies reveals that at baseline participants commonly used simple strategies such as making sure a goal is reachable and planning to do things to reach a goal more specific strategies such as telling someone about the goal and breaking the goal into small steps were less commonly used there were not intervention and comparison group differences in the use of goalsetting strategies from baseline to followup this suggests that although women worked on their goals during the intervention they apparently did not use the strategies for goal setting that were taught by the intervention these data suggest that teaching goalsetting strategies does not appear to have had an impact on behavior change in this study but it is premature to draw this conclusion without a more detailed examination of goalsetting strategies used by study participants working on goals was found to mediate the effect of the intervention on behavioral outcomes mediation was detected for the outcome of physical activity with 34±31 of the 151 minutesweek increase seen in the intervention group accounted for by progression in stages of change although there were group differences in progression in stages of change for fruit and vegetable intake mediation was not detected because the intervention did not have a significant impact on fruit and vegetable intake these results indicate that the intervention did influence participants to work on their physical activity goal and this in turn led to increased physical activity showing that goal setting was an important intervention component for achieving behavior change interventions that provide comprehensive support for goal setting establishing a goalsetting process incorporating feedback barriers counseling and skill development are found to be most effective at helping participants achieve goals 25 mediation analysis is a useful tool for determining which components of an intervention contribute to behavior change 26 the authors understanding of goal setting for obesity interventions would be improved if intervention studies involving goal setting used this simple methodological approach to examine the pathways by which goal setting is expected to have an impact on behavior change the analyses of racialethnic group differences revealed important factors to consider when incorporating goal setting into obesity interventions for rural minority women black and white women were focused on different types of goals a majority of participants were in the contemplation or action stage of change for working on health goals of improving diet increasing physical activity and working towards a healthier weight at baseline however a greater proportion of black than white participants had an interest in addressing goals related to the social determinants of health such as getting a better education owning a home starting a business and improving job skills although it is unclear why there is a lower reporting of interest in these goals by white participants black participants reported significantly lower levels of education and income than whites this emphasis on social determinants is consistent with two qualitative studies conducted in the rural south of the usa in which black participants identified a strong need to address the impact of social determinants including employment and education on their health 3637 future health interventions targeting this population should consider incorporating intervention components that address the root causes of poor health by modifying social and environmental factors 38 this study found that white participants showed greater progression than black participants in working on goals over the course of the intervention at the individual level black participants demonstrated no progress in working on goals to improve diet and weak progress in working on goals related to increased physical activity and healthier weight additionally despite greater interest by black participants at baseline in working on life goals such as improving education and job skills there was no progress in these areas a longer term intervention may be necessary to detect such changes to social determinants of health it is also possible that the structure of the intervention specifically the social support and information provided by the circle meetings may not have been enough to help participants make progress on their life goals furthermore addressing more distal environmental factors by for example working with organizations and banks that can assist with financial literacy and empowerment may be necessary for modifying the social determinants of health however all of these efforts may be particularly challenging in rural areas where access to organizations banks and other resources may be limited highlighting the need for connecting lowincome rural populations to the resources that can help them move out of poverty particularly black participants or those groups most negatively affected therefore a combined intervention approach that incorporates changes at the individual social and environmental levels may be most effective for addressing social determinants of health the analysis of racial differences in use of goalsetting strategies revealed that black participants were more likely than white participants to write down their goals in an effort to identify optimal goalsetting procedures for different racialethnic groups future research should further examine differences in the use of strategies and potential impact on behavior change this study is limited by the quasiexperimental study design which is not as robust as a randomized trial however this was the only feasible approach for implementing this communitybased study furthermore generalizability is limited in cbpr studies such that the results may only be generalizable to similar populations in similar communities the goalsetting measures were developed specifically for the study population and were not previously validated however the data come from a cbpr study in which all of the measures were developed with the input of community partners and pretested in the study communities while this study involves a more detailed assessment of the goalsetting component than many other weight control intervention studies 1725 the questions on goal setting are somewhat limited all surveys used with the study sample are kept within a maximum length to avoid participant burden thus many additional factors could have been tested and should be considered in future obesity intervention studies that involve goal setting for example moderators of goal setting could be examined such as goal commitment goal importance and selfefficacy to better understand the mechanisms by which the intervention has an impact on behavior change collection and analysis of qualitative data on goal setting would have been helpful since measures of goalsetting strategies were not helpful for understanding goal achievement furthermore the short intervention time frame may have limited the ability to detect changes in life goals that would require more time to achieve this study has a number of strengths first it involved a unique population of predominately lowincome and minority women living in a rural location review studies on dietary and physical activity interventions involving goal setting reveal that studies involving minority lowincome and rural populations are limited 1725 second the study addressed limitations of previous research by using goalsetting theory to help design an intervention that fully supports strategic goal setting finally this study had an adequate sample size to detect group differences in conclusion this research uniquely contributes to the body of literature on goal setting for obesity interventions by using mediation to identify the specific effect of goal setting on behavior change the ability to demonstrate that progression in goalrelated stage of change in physical activity leads to increased physical activity for those contemplating change at baseline indicates such interventions can be successful at incrementally improving obesityrelated lifestyle behaviors the lack of progression among those in precontemplation at baseline indicates the need for tailored approaches and strategies to increase readiness for change the study also adds to the knowledge base on goal setting among minority populations revealing that black women may focus on different goals than white women this further highlights the importance of tailoring materials to meet participants needs and interests furthermore economic and social needs may have to be addressed for women in resourceconstrained environments to successfully meet their health goals

goal setting for health behavior change evidence from an obesity intervention for rural lowincome women

background hiv remains a significant local and global health problem with an estimated 369 million infected worldwide 1 the majority of cases are in low and middleincome countries resulting in national governmental and nongovernmental control efforts as well as international support from agencies including unaids and the world bank 12 across south america there are still significant barriers in achieving optimal care for people living with hiv including stigma discrimination misinformed health beliefs economic limitations and administrative barriers 34 stigma has been shown to disproportionately affect men who have sex with men a group that also have reduced access to care 5 6 7 8 9 antiretroviral therapy has been shown to prevent hiv transmission through condomless sex when hiv viral load is undetectable achieved by strict adherence 10 by 2020 unaids aims to diagnose 90 of hivpositive people provide art to 90 of these and achieve viral load suppression in 90 of those treated worldwide 11 adherence to art in south american countries like peru is likely to be below levels needed for viral suppression which may contribute to increasing hiv incidence and mortality rates 1213 peru is a lowermiddle income country with approximately 70000 people living with hiv 1415 prevalence has risen by 24 since 2010 and aidsrelated deaths have increased by 14 14 hiv is predominantly spread through unprotected anal intercourse 16 the epidemic concentrates in key groups with over 60 of new infections accounted for by transgender women and men who have sex with men 1417 in 2017 the prevalence of hivpositive men who have sex with men was 41 times greater than the general population 18 an estimated 24 of hivpositive men who have sex with men are aware of their diagnosis 14 of those that know their diagnosis 156 have regular engagement with medical care 136 are on art 12 have a supressed viral load 17 the ministry of health in peru has guidelines in place for the prevention treatment and control of hiv aligned with international standards 19 access to antiretroviral therapy is free at the point of delivery based on researcher observations patients collect their medication every 13 months from the hiv clinic where they are monitored by a multidisciplinary team they receive education and psychological support in clinic and are invited to attend small education meetings that are run infrequently at the hospital to reduce the peruvian hiv epidemic unaids have recommended the elimination of discrimination known to have detrimental effects on treatment adherence 1420 a 2018 crosssectional report found that 47 of 600 people living with hiv across peru had experienced some form of discrimination in the last year a population survey of over 3000 peruvians found that only 45 would consider hiring someone with hiv despite workbased discrimination being illegal 21 highquality epidemiological data on discrimination is scant the amazonian region of loreto is a key area for hiv transmission with the second highest prevalence of hiv in men who have sex with men after lima 22 loreto has the highest regional adjusted hiv mortality rates and years of potential life lost from hiv infection in peru 23 this is over five times higher than the national average and is steadily increasing 23 loreto has one of the lowest densities of health workers in peru with a hrh density of 10810000 24 there is limited research into the high mortality and hiv prevalence in loreto past research has identified discrepancies between rural and urban health improvements in peru due to poverty low education levels low subnational governance capacities and underfinancing of the health sector in rural areas 25 in 2015 the regional government of loreto stated the need for studies on the behaviour of patients with hiv and the importance of adherence to treatment as a health priority this study therefore aims to understand the behaviours of hivpositive men who have sex with men including adherence and access to care a scoping literature search on medline pubmed and web of science revealed limited qualitative research into the barriers hivpositive men who have sex with men face in obtaining optimal care of their condition in peru all relevant qualitative literature identified in peru was from lima in 2006 curioso et al conducted a qualitative study which outlined barriers and facilitators affecting art adherence in hivpositive subjects 26 barriers included art sideeffects simply forgetting inconvenience and fear of disclosure and stigma 26 facilitators included a fixed routine understanding the need for compliance seeing positive results treatment knowledge and having faith in treatment 26 a 2016 crosssectional study found a highlevel of stigma was associated with hiv which was negatively associated with art adherence 27 a 2019 study showed that patientelected treatment supporters helped people living with hiv take responsibility for their treatment facilitated transfer of knowledge and provided emotional support for patients in lima 28 a recent longitudinal study has identified the need for prediagnosis psychological assessment in peruvian men who have sex with men to identify those with maladaptive coping prediagnosis who are less likely to link to care 29 to our knowledge there has been no research into the hivrelated knowledge level of the men who have sex with men population in peru existing qualitative studies with hivpositive men who have sex with men in peru focus on perceived stigma 3031 clarke et al concluded that hivpositive men who have sex with men in lima perceive that notifying a sexual partner of their hiv status was to reveal stigmatising information about their sexual practices and portrayed the participant as promiscuous 30 a worldwide search identified 16 relevant qualitative papers in hivpositive men who have sex with men in regard to barriers to care the majority undertaken in africa and asia stigma relating to hiv status and sexuality was a recurring theme as a barrier to disease control 32 33 34 35 36 37 two studies in china identified barriers to care in men who have sex with men as negative coping and mental health misconceptions of art benefits nondisclosure of hiv status and lack of trust in the health services 3233 facilitators included social support reduced hivrelated stigma and specialised services 3233 public education and other measures to reduce stigma were widely recommended to improve healthcare access and adherence to care 32 33 34 35 36 37 aims and objectives this study aims to improve understanding of perceptions and experiences of hivpositive men who have sex with men living in loreto in order to identify barriers to accessing and adhering to the hiv care continuum this should contribute to improved access and adherence to treatment regimens and a reduction in hiv transmission to ultimately reduce the morbidity and mortality in this population aims will be met through the exploration of the following objectives to understand the extent of knowledge of hiv including transmission importance of art and safer sexual practices to establish the facilitators and barriers to local care pathway access and adherence methods study design and population a qualitative approach was used to gain insight into the experiences and perceptions of hivpositive men who have sex with men and healthcare professionals in regard to barriers and facilitators for hivpositive men who have sex with men adhering to the care continuum semistructured interviews with hivpositive men who have sex with men and a focus group of hcps working clinically with hivpositive men who have sex with men were conducted in spanish januaryfebruary 2019 both were facilitated by an experienced interpreter 1 setting iquitos the bustling urban capital of loreto perus largest region this vast area of amazonian jungle is predominantly connected by waterways for which residents use slowmoving water transport its estimated population was 437000 in 2016 38 the unique region is geographically isolated from mainland peru with limited contact to metropolitan capital lima the use of alternative amazonian medicines is common method 1 patient interviews population and sampling participants were recruited from the hiv department of the regional hospital of loreto a main provider of art to men who have sex with men in loreto and algo bello para dios a shelter for those with hiv in iquitos participants were purposively sampled for a variety of responses and to explore candidate themes representing a range of ages and socioeconomic backgrounds 39 biological males with a clinical hiv diagnosis were recruited participants had selfreported past sexual relations with a man spoke spanish or english and lived in loreto participants that did not consent to the full interview lacked capacity or suffered from a health condition that affected their ability to interview were excluded after expert consultation it was decided not to actively approach transgender women to participate as this group were likely to have had different experiences to the men who have sex with men population despite similarities in hiv prevalence 14 the study title was presented to potential participants with participation at their discretion recruitment men waiting in the clinic or shelter were approached by the principal researcher and es potential participants were informed of study details in private eligible participants were given time to read an information sheet and consent form recruitment continued until data saturation was met data collection individual indepth semistructured interviews were chosen to enable sensitive information to be shared 40 a demographic questionnaire recorded age sexual behaviours occupation condom use adherence to art risktaking behaviour sexual identity and education level interviews were conducted by pr facetoface in a private room at the rhol and the algo bello para dios shelter exploring perceptions experiences and understating of hiv and how this influenced treatment adherence interviews were recorded on an encrypted device field notes were taken for context 41 a semistructured topic guide was used based on research objectives the structure was influenced by a previous guide from a study investigating adherence in hivpositive men who have sex with men in portugal 42 a culturally appropriate case study was used to ease participants into a potentially sensitive interview based on advice sought from an objective published author who had experience with this key population 43 participants were encouraged to share their individual experiences and views the guide generated a variety of responses surrounding access and adherence to care pathways a pilot interview confirmed that the guide was culturally appropriate and clear so was included in the analysis realtime interpretation between english and spanish was provided by es indirect translations were noted and discussed after the interview 44 translation quality was independently confirmed in the pilot interview by a second researcher who is a native spanishspeaker information sheets consent forms and the topic guide were translated to spanish and checked for accuracy and comprehension method 2 focus group with healthcare professionals population and sampling hcps were purposefully sampled to gain a variety of insights and generate an informationrich focus group discussion with variation in age sex and professional status criteria for inclusion were adult working with hivpositive men who have sex with men in loreto able to communicate in spanish and living in loreto exclusion was as for method 1 recruitment professionals were approached by pr and es in the rhol hiv centre focus group details and times were explained participants were given an information sheet and consent form in spanish data collection a focus group of hcps were invited to partake in a discussion between care providers in the main hiv treatment centre in iquitos this adds understanding and context to the main patient data collection a semistructured topic guide was adapted from the patient interview guide to align key themes and topics recorded participant characteristics were age occupation gender sex and time working with hivpositive men who have sex with men patients the focus group was audiorecorded and field notes were taken interpretation and translation accuracy checks were conducted as for method 1 data analysis after completion es transcribed the interview and focus group recordings verbatim in spanish and then translated transcripts to english accuracy was checked by the pr and a second spanishspeaking researcher discrepancies and nonliteral translations were discussed es gave cultural context interview data were analysed in an iterative process throughout data collection by pr with input from es the salient points were discussed and recorded immediately after each individual interview in english to determine if data saturation had been met and to determine future sampling decisions a thematic content analysis was used 40 braun and clarkes 6phase approach was followed to become familiarised with the data undertake inductive coding and developrefine themes 45 a second independent researcher blindcoded a random sample of three anonymised interview transcripts for triangulation coding differences were discussed for moderation the coding list was updated accordingly a third researcher blindcoded the focus group discussion with es ensured themes were culturally appropriate study validity was increased through the use of deviant case analysis and through reflection of pr on their impact on the process ethical considerations informed written consent was taken from all participants prior to beginning the interview or focus group informed verbal consent was obtained from illiterate patients focus group participants were asked not to mention any patient identifiable data and to ensure that content was not discussed after the focus group es and the second spanish speaking researcher signed a confidentiality agreement prior to beginning data collection interviews were conducted in a safe confidential space the study protocol was adhered to data was stored in accordance to the university of birminghams data protection policy 46 results results were split into interview results and focus group results results 1 interviews twentytwo participants were interviewed two were excluded from data analysis as they were not able to fully answer the questions and terminated the interview early mean interview length was 5440 min participant characteristics all 20 participants were native spanishspeakers living in loreto average age was 34 range three participants could not read interestingly four participants identified as female gender a point explored in the discussion one participant identified as heterosexual despite prior samesex sexual activity ethnicity was excluded as a category this did not translate or have meaning for participants tables 1 and2 summarise their characteristics findings five key overarching themes were identified from the interviews listed below each theme comprised subthemes participants are identified by p and their assigned number after their quotation theme 1 understanding of hiv theme 2 stigma sequela theme 3 education strategies theme 4 importance of accepting treatment responsibilities theme 5 practical barriers to treatment adherence participant correspondence to subthemes is summarised in table 2 understanding of hiv this theme revealed the limited patient and public knowledge surrounding hiv including common public misconceptions that result in active avoidance of hiv patients incomplete patient knowledge of hiv all participants understood the importance of condom use in preventing sexual hiv transmission more advanced understanding of transmission was demonstrated by few participants hiv can spread by having unprotected sex blood transfusion from one open wound to another and the use of syringes p12 there were distinct gaps in participants knowledge some mentioned solely sexual transmission others mentioned modes that are incorrect such as transmission using sharp objects and even through mosquitoes p14 all participants understood the importance of following treatment information that seemed to have been provided by the healthcare team the doctor tells me that i can have a long life if i take my medication p18 knowledge of specific complications of hiv was limited with the main complication being that the patients can die five participants mentioned immune compromise and feeling ill but overall understanding of complications was vague this is an area that could be incorporated into future patient education strategies for early detection of common complications i think that when you do not take the medication you can have complications like a strong flu that can kill you p12 all of the participants agreed with the case used in the topic guide that features a patient stopping art when they start feeling better most either described a similar past experience or knew of friends that had done the same believing that the virus had been treated this was often despite being educated by the hcps those that had left the care continuum usually returned after suffering complications i had been taking my medication for a year and i felt very good so i thought i didnt have the virus so patient stopped taking art six months ago i had serious complications p15 three patients had experience of substituting art with a traditional medicinal diet or plantbased alternatives or knew of someone that had a member of my family died from hiv one week ago he didnt stick to his treatment because someone else told him to take vegetables he went to the jungle to drink oje it is a plant that cleans the blood then he came back in a very bad state of health and days later he died p16 public misconceptions all participants outlined common misunderstandings about hiv that they had experienced in their families communities or had themselves prior to their diagnosis eight participants outlined the misconception that hiv was always an acute terminal diagnosis upon diagnosis many were not aware that there was a treatment for the disease leading to low mood and fear i did not know there was a treatment for this disease and i felt very sad now i know there is treatment and i feel good p9 in some cases this affected treatment adherence participants believed that medication was futile if they were going to die anyway and hence rejected their treatment responsibilities a friend told me it does not matter if i take the medication im going to die anyway that was one of the reasons why i decided to stop the treatment p15 four participants highlighted that many believe those with hiv look ill and malnourished some participants reported having unprotected sex if a partner looked healthy friends were quite surprised about my diagnosis because they thought that a person with hiv is a person who looks bad skeletal and is bedridden then when they found out they said wow because i did not look sick p5 most participants were frustrated at the lack of public knowledge surrounding hiv transmission hiv is the first stage of aids and people do not know that they think that they are going to get infected just by touching p10 some had experienced beliefs that hiv was limited to certain groups eg many people believe that this disease is only acquired by promiscuous people sex workers and homosexuals and thats not true p5 improvements in public education and public campaigns could address these misconceptions in the wider population stigma sequela a culture of stigma and discrimination was reported this was split into four subthemes describing the effect stigma and discrimination had on participants active avoidance of hiv patients patient depression shame as a barrier to diagnosis and treatment and discrimination at work active avoidance of hiv patients a culture of avoiding those with hiv was described by 14 participants leaving them feeling socially rejected this had an impact on the participants social family and professional lives some felt confined to their house one case featured past discriminatory behaviour from a hcp i felt discriminated when i had an accident the nurse didnt want to clean my wound because he knew i had hiv p16 my sister didnt want to come close to me and every time they my sisters children approached me their mum used to tell them not to do it because im sick p5 many participants felt isolated by the lack of understanding in the general population as highlighted in theme 1 including the misconception that hiv is spread through saliva and touching depriving patients of kissing or sharing drinks this again could be addressed by improved educational efforts some reported family forcing them out of their house and friends moving away one day a boy with hiv asked for a glass of water and my uncle gave him a glass of water and then he threw the glass in the trash and that is not correct because hiv is not spread by saliva p15 i told my niece then my uncles and every time i went to ask for help they would throw me out of their house and i used to leave crying and my friends do not touch me or talk to me now p8 fear of discrimination led to participants opting to withhold their hiv status one had not disclosed his status to anyone i lie to people when they ask me what i have because they will discriminate against me p8 when asked to think about the experiences of hivpositive homosexual bisexual and heterosexual men most participants felt these groups shared the same experiences seeming to interpret the question in a purely physical sense one participant added that our society will always prefer heterosexuals and single out homosexuals i had to pretend for many years that i am heterosexual so that my family accepts me p5 eleven participants attributed stigma and discrimination to ignorance and a lack of education including instances where views had changed once people had received relevant education this highlights the positive and direct impact education can have on patients daily lives and support networks some of them used to tell me not to get close to their children and they used to tell me ugly things but when they the doctors explained more about hiv their attitudes changed p5 two participants did not report experiencing discrimination notably they had accepted their disease and had family support three other participants believed discrimination had reduced people are afraid of rejection and thats why they dont say anything and they have unprotected sex my partner didnt tell me he had the disease until i discovered it by myself p5 testing was typically done when participants had symptoms or had suspicions about their partners fidelity only one participant went for routine tests this was avoided by others because of fear and shame people are afraid or ashamed and they do it a hiv test when they feel poorly or when they want to know if they have hiv p8 once diagnosed shame was described as a barrier to care access and remaining in treatment participants did not want to be seen at the hiv clinic or taking daily medication i was afraid and embarrassed i didnt want people to see me in the hiv area when i started the treatment p15 the majority of people feel ashamed and thats why they die p16 shame informed why some chose alternative treatment options a path made more attractive by the widespread belief in alternative amazonian medicine described in theme 1 i had a friend who told me that he was ashamed to go to the clinic and that is why he was following a plant based treatment its been almost three years p5 two participants did not report feeling ashamed of their diagnosis they had a high level of disease acceptance family support and disregard for those that might discriminate discrimination does not influence my disease control because i dont give it too much importance they laugh at me but i dont care p7 discrimination at work four participants shared stories of being discriminated against at work three reported discriminatory testing requirements in low transmission risk occupations a negative result was needed to apply forremain employed in these cases some reported experiencing verbal discrimination these experiences had negative psychological effects i am a supervisor and i called over an employee and she discriminated against me for having hiv in front of many people it made me feel very bad p5 when you apply to a company they ask you for a hiv test and if positive they do not accept you at work i felt depressed p10 work had a detrimental effect on disease control participants feared revealing their hiv status at work so could not take the time off andor had to travel away for work which impacted on clinic attendance and became a practical barrier to treatment adherence consequently few participants had jobs i had to travel for work and thats why i left treatment for six months p20 contrarily hiv did not always interfere with professional life one participant had been actively encouraged to seek treatment by his colleagues my bosses know that i have hiv and they send me to the hospital to receive my medication i am a cook assistant p17 education strategies most participants described the need for improved public understanding particularly in areas of hiv transmission and treatment participants believed education could aid hiv prevention disease control and reduce discrimination need for more accessible education participants recommended improved public education strategies to reduce the hiv epidemic local men are at risk of hiv because they do not have enough information and they are not aware that they should use a condom p19 this was also considered important in improving access to care researcher what can be helpful for men who have sex with men in accessing care pathways to take care of themselves and attend the small group educational meetings about this topic p2 education provision when patients were diagnosed was mentioned as important by 10 participants particularly for psychological health early acceptance and disease control i got depressed but after receiving the treatment and the visits to the doctor i started to feel much better p2 it was acknowledged by seven participants that public education improvements can reduce stigma and discrimination some stated that this was important in improving disease control for patients to help hivpositive men who have sex with men access freely provided care pathways there needs to be total awareness but not only to the men who have sex with men community but also to the whole society because discrimination and rejection affects many p5 participants stated the need for more education through alternative routes in addition to school including small group educational meetings local events and providing a specific place to acquire information this is particularly important as some people do not attend school in loreto if i wasnt diagnosed i wouldnt have known anything about hiv i never went to school p18 participants described that those in communities and villages faraway from iquitos are at higher risk of hiv due to reduced information access and provision resulting in unsafe sexual practices this group also faces difficulties in accessing treatment due to their remote location people who are far away from the city are more at risk of hiv infection than those in the city because they dont have information about the topic some do not even know what hiv is p12 five participants however stated that education had reached a sufficient level in loreto there is enough education in secondary schools there are courses about diseases not only here but in the villages too they carry posters and talks i always participate in small group educational meetings p11 engaging young people seven participants believed it was particularly important to educate young people school education was identified as important providing opportunity to challenge stigmatising beliefs and prevent future spread of hiv most were unsatisfied with the hiv education that they had received wishing it had gone deeper than solely mentioning safer sexual practices more information should be provided in schools but not only in secondary school but also in primary school teaching children how can it be spread prevention and how to treat a person with hiv i think that young people would learn to respect from an early age and there wont be much discrimination p12 educating young people that are involved in party culture was acknowledged as important in prevention some participants stated that parents give their children too much freedom which can lead to risky behaviours and hiv transmission improvements in parenting were identified as key to changing young peoples behaviour there is not enough education i think education should start at home if parents teach their children from an early age about hiv children would grow up knowing how to take care of themselves p13 two participants thought that there was sufficient information for young people at school and through social media they believed that young people do not seek out available information and consider the consequences of unprotected sex there is a lot of information on the internet in social media i think it is the spread of hiv because of parties and alcohol young people dont measure the consequences and they have unprotected sex with girls and homosexuals p16 importance of accepting treatment responsibilities the importance of personal acceptance in improving and maintaining disease control was a trend identified throughout the interview data adopting a new lifestyle and support from family friends and the hospital aided patient acceptance personal acceptance the importance of personal disease acceptance was discussed in nine interviews regarded to be central in maintaining disease control i attend clinic because it is my responsibility to come and stay in treatment p10 the participants psychological wellbeing no i am not worried about my disease i got diagnosed 13 year ago and i have accepted the disease p16 andas earlierovercoming shame as a barrier to treatment participants stated that the consequences of nonacceptance resulted in a lack of careseeking behaviour and poor treatment adherence i think that its one of the main problems people do not accept their diagnosis and therefore make decisions that endanger their health p5 adopting a new lifestyle a culture of alcoholuse parties unprotected sex and commercial sex in loreto was described by all participants this was considered responsible for the spread of hiv in men who have sex with men with one participant describing this as the lifestyle of men who have sex with men in bars men offer money to homosexuals in exchange for sex and they accept they sell their bodies for us 50 cents p17 once diagnosed participants stated that people with hiv had to choose whether to adopt a new responsible lifestyle and adhere to treatment or continue a disorganised lifestyle and lose disease control this concept was expressed by 17 participants a responsible lifestyle as advised by hcps included avoiding alcohol and drugs going to sleep at a reasonable hour taking medication on time and eating healthily hcps forbid us to consume alcohol drugs smoke even a lot of sleeplessness its bad for us because we do not have a strong immune system p5 i used to forget my pills and i abandoned the treatment for one year because i liked to go to the parties and drink with my friends p18 one participant believed that these lifestyle changes had had a positive influence and seemed thankful now i have an orderly and healthy life style i dont sleep late or drink as i did before i am very careful and hygienic with food hiv intervened in a positive way and now i have a better life style p12 this allornothing health belief seemed to adversely affect adherence in some cases with respondents considering leaving the treatment in order to resume their social life sometimes i want to leave the treatment because of my friends to go to parties p7 support structures the importance of support systems in hiv control was highly regarded by 18 family support was described as particularly important in achieving adherence if it were not for them family i wouldnt take my medication and i would already be dead i came to iquitos to receive the treatment because my family supports me here p6 family support was important for psychological wellbeing and dealing with discrimination friendships were also described as a useful support system to a lesser extent when not supported patients were emotionally affected one participant cried during the interview i have experienced bad comments of people my neighbours and discrimination in general but i do not care because my family love me p6 on diagnosis i told my dad he lives with his partner and when she found out they told me to leave the house they reacted bad participant starts crying p20 the psychological support motivation and education from the medical team was viewed as important throughout the interviews the psychologist was cited as particularly helpful in providing facilitators to care i feel bad i want to cry because of the rejection but i have the help of the psychologist p8 participants benefitted from taking their family to be educated at the clinic this commonly dispelled misconceptions that family and friends had and enabled them to support the patient i decided to bring her my sister to the hospital so the doctor would inform her about hiv and then she changed now i have a normal life in my family work and with friends p5 religious belief and support from a social worker were central for two participants remaining in care practical barriers to treatment adherence individual barriers to treatment adherence included travelling to clinic and initial sideeffects of art travelling to clinic six participants outlined the difficulties of travelling long distances from amazonian communities to reach iquitos in order to receive monthly treatment impacting on treatment adherence some found it difficult to afford travel costs yes i am concerned about my health because im not going to have money to go to the clinic and have my appointments with the doctor p18 some participants mentioned difficulties taking time off from work to travel long distances to clinic resulting in people leaving the treatment leaving art treatment is common in some people because they live far away from the clinic they dont live in iquitos and it is very difficult to leave our work to come to pick up the medicine p6 one participant suggested decentralisation of treatment services to reduce travel difficulties some peoples treatment is delayed because of the distance that is why the treatment must be available in all hospitals p11 sideeffects of art a quarter of participants described the severe initial sideeffects of art as a common factor behind patients leaving the treatment many times i wanted to leave the treatment because of the sideeffects it caused to me but i had to get used to it p12 understanding that initial sideeffects would subside facilitated treatment continuation this information had been received from the doctor in all cases the first two days the treatment hit me very hard but the doctor told me that they are positive reactions for us thats how our body should react p5 results 2 focus group participants all five hcps that were approached agreed to participate in a focus group two could not participate as their clinical work that overran leaving a final focus group of three participant characteristics participants were current employees at the rhol hiv department due to identification risk in a small sample their specific roles are not published staff all had experience of working with men who have sex with men hivpositive patients the mean average age was 45 all were native spanishspeakers findings two themes were identified from salient features of the group discussion participants were coded fg an assigned number for quotation the theme art treatment avoidance was separated into subthemes focus group duration was 30 min 29 s art treatment avoidance participants had observed multiple barriers affecting patient access and adherence to treatment including stigma and discrimination difficulties in accessing treatment taking plantbased medicine and social barriers to care stigma and discrimination the clinician explained that discrimination is so common and widespread that it has become part of loreto culture perpetuated by a lack of information discrimination is basically cultural for example when i see the patients the family comes and they ask me doctor can we talk to him or will he be able to eat with us you see it is the lack of information about the disease fg3 participants explained that discrimination in loreto stems from poor education they described that the public are unsure of hiv transmission with beliefs that the virus can be transmitted through touching or talking leading to patient isolation and emotional stress if your neighbour knows you have hiv they do not want to talk to you anymore i had a patient who came devastated because he could not even hug his children because some people told his wife that he can infect them fg3 they stated that patients become discouraged in controlling their disease after experiencing discrimination patients do not access the healthcare system they know their diagnoses but they are afraid and ashamed fg2 patients do not accept to come and risk being seen by someone that knows them there are people who become discouraged they do not care if they die fg3 it was stated that some patients were severely affected by discrimination resulting in cases of depression and suicide this kind of discrimination affects the patient psychologically they think that the treatment is not worthy they get depressed and they commit suicide fg2 the participants seemed frustrated that there is information available online if patients or the public wished to find it but they do not engage this results in the continuation of widely held discriminatory beliefs and patient isolation there is a lot of information on the television and the internet but people do not read they do not educate themselves that is why they have these wrong ideas and they are isolated fg3 access to treatment difficulties the hospital staff stated that patients receive high quality care from their team at rhol however care at community health centres was of low quality with long waiting times a major barrier to men who have sex with men accessing care is the quality of services there are some situations of abuse to the patient in health centres for example making them wait a long time the type of treatment they receive fg3 the distance needed to travel and transport costs to get to hospital was reported as a barrier to care sometimes they do not have two pen equivalent to 60 us cents for their transportation and thats why they do not come fg3 this problem appeared worsened by the limited number of regional art providers there are many health posts here but few are authorised to provide the medication fg3 alternative medication the focus group stated that alternative traditional plantbased medicines from the amazon rainforest was often chosen in place of or in conjunction with art this information was not always voluntarily communicated by patients and was seen by hcps as part of loreto culture there are some patients who give up on treatment for two or three months and always have illogical justifications and many times they do not return its a cultural aspect many people take natural medicine but they dont say it fg3 participants believed lack of education was behind risky behaviours common in iquitos particularly in the younger population in iquitos there is a lot of debauchery many parties you see that very young men and women are in states of alcoholism and drug addiction and that happens because of lack of education fg3 the allied health professional highlighted that some rural communities cannot access hiv information perpetuating misconception and discrimination there are many places communities where people do not know what hiv is because there is no education television and that is why discrimination occurs and they decide to separate family members fg2 participants conveyed the need for improvement in educational programmes which community agents are responsible for particularly community health workers were highlighted as providing incorrect information and misleading communities leading to confusion surrounding hiv community health workers dont go to the communities they do not give informative talks like before fg2 an annual plan to improve prevention of common infectious diseases was proposed focussing on community care workers these information providers should be proficient in teaching and providing correct information political action could make an education campaign more impactful the establishments or community care workers should have an annual plan of projects for the communities they should provide information about diseases such as hiv tuberculosis etc community care workers are responsible for educating they must be people who know about the subject and they must teach with pedagogical methodology fg3 parental education was deemed important to ensure families could support hivpositive childrenrelatives and educate their children themselves the family support is very important people who receive support from their families overcome it hivrelated depression easily fg3 discussion this is the first detailed qualitative study investigating barriers and facilitators to optimal care of hivpositive men who have sex with men in peru five central themes were identified by 20 patient participants understanding of hiv stigma sequela education strategies accepting treatment responsibilities and practical barriers to treatment adherence two key themes were identified by hivspecialist hcps art treatment avoidance and community education improvements it is noteworthy that staff and patient themes closely correlated study findings are similar to comparable studies in other lowmiddleincome countries patients had a limited understanding of hiv and public misconceptions about hiv transmission and severity were described the latter may link to loreto having the highest mortality rate in peru 23 these misconceptions have not been previously identified in published reports in peru similar findings have been identified in africa 4748 the assumption that it is possible to tell if someone has hiv from their physical appearance increases risk of transmission by failures to implement safer sexual practices practical barriers to care were heavily featured in the data particularly in the focus group participants identified travelling long distances to clinic 13 times a month as a barrier to care travel was stated to be expensive and timeconsuming weiser et al identified financial constraints and travel to be a principle barrier to care in botswana 49 interestingly this was not a barrier in urban lima 26 investment in more local clinic provision of art mitigating the time and cost implications of travel to a centralised clinic should be considered in line with world health organization guidance to increase art adherence 50 clinicbased reimbursement schemes could be trialled as financial support has also been shown to improve nonadherence 51 discriminatory misconceptions in the patients families and local communities result in the isolation and rejection of hiv patients most patients felt ashamed of their disease and feared the social and physical consequences this led to delayed hiv testing and dissuaded participants from accessing care closely corresponding to findings in lima and guatemala 2637 addressing treatment adherencerelated misinformation and providing access to social support in a culturally sensitive manner has been found to improve adherence by simoni et al 52 adherence clubs and short messaging services have previously been shown to improve adherence in some resource poor settings 5053 in lima sms with reminders and motivational messages have been shown to be feasible and were associated with improved adherence amongst hivpositive young people 54 a digitalised appointment system could assist in providing this service on a larger scale in loreto 54 instruments to measure adherence should be developed 55 stigma and discrimination should be tackled by the involvement of grassroots hiv advocacy organisations and regionally coordinated education programmes working to enhance community empowerment in men who have sex with men 56 patients should have access to appropriate social support antidiscrimination and protection policies and practices should be regionally reviewed by policymakers and governmental leaders with input from men who have sex with men stakeholders 56 programmes inside and outside of the healthcare service should promote such policies and codes of conduct to create a supportive environment 56 progress should be monitored the occurrence of employmentdependent hiv testing was highlighted in both groups despite this being illegal 57 reducing discriminatory practices in the workplace is necessary to ensure patients can continue to treat and financially support themselves clinicians should ask about employment and encourage reporting to enable antidiscriminatory policies to be implemented wider populationbased education is needed to make this a sociallyacceptable option for patients worryingly 1420 participants reported significant low mood related to their hiv diagnosis and 720 reported a history of suicidal ideation poor mental health linked to men who have sex with mens hiv diagnosis has been identified in low and high income countries with strong associations with social exclusion and experience of verbal abuse 355859 a 2016 study using bidirectional counsellorparticipant exchanges found that depressive and anxiety symptoms were common postdiagnosis in men who have sex with men in lima 60 these sms exchanges facilitated care engagement retention in care and provided emotional support 60 sms exchanges could be trialled in loreto as previously mentioned further research should investigate the prevalence of low mood and suicide to help improve the steering of mental health services and retention in care most participants did not think that men who have sex with men were treated differently from other hivpositive groups contrary to what was expected based on a comparable limabased study 30 however this could be because in loreto culture a positive hivstatus is directly linked with a homosexual identity such that all individuals living with hiv are presumed to be homosexual the transgender population have been found to be more socially marginalised with worse care outcomes than men who have sex with men 14 this group was not excluded at recruitment but all subjects were recruited as males due to concerns about differences in patient experiences between these populations four included participants identified themselves as female on the patient characteristics sheet though it would be unwise to second guess anyones selfidentification this finding could tentatively be explained by misunderstandingmisinterpretation of the question female selfidentification or undisclosed gender transition future studies are needed to compare and contrast experiences and perceptions of different hivpositive groups to improve service provision and treatment adherence participants were enthusiastic about the need for improved public and patient education in both data sets of particular importance was improved understanding regarding modes of disease transmission and the efficacy of art treatment this should reduce stigma young people families and communities outside of iquitos could be prioritised with improvements in quality and provision of community education through community health workers past research has found that schoolbased education programmes are costeffective in preventing hiv in men who have sex with men in peru 61 so this model could be drawn on previous national research has shown that if patients commence art through community health workers treatment coverage is increased and mortality decreases 516263 in 2012 the world bank identified the need for strategic implementation of more trained specialist community health workers dedicated to hiv prevention and education from a baseline of four fulltime employees for the whole region 64 recommendations were partly based on community health workers in brazil where there are competency requirements for training workers are fully integrated into the local health system and the scope of practice is mandated by federal law 65 improvements of regional community education programmes are a priority to address in this region of peru changes in community health should be coordinated and regularly monitored to ensure that improved health outcomes are maintained acceptance of the disease was considered important in both accessing care and treatment adherence family support and living a healthy lifestyle helped achieve disease acceptance factors that were encouraged by the healthcare team at rhol the importance of disease acceptance and family support was unsurprising being a common finding in the wider literature 263236 some participants had experienced severe rejection also found in previous research in india which had marked detrimental effects on adherence 66 public education campaigns should therefore ensure families are involved to improve patient support one barrier to adherence that did not align with existing international qualitative research was the culture of using traditional amazonian plantbased medicine as an alternative to art the use of amazonian plant medicine is well documented but how this relates to hiv has not been specifically studied 6768 further research should investigate the prevalence and effects of alternative treatment use and hcps should ask about alternative medicine use in routine clinic visits limitations this studys major limitation of recruiting from the rhol and the hiv shelter meant that nonadherent patients or people that have not accessed care are not represented we attempted to recruit this group but were informed by the host in iquitos that it was not possible on account of there being no tracing system or recorded contacts for patients this makes the study less generalisable but is a feature of such research in that only visible or traceable participants can be interviewed meaning can be lost in translation as far as possible interpretation risk was minimised by discussion of unclear or nonliteral translations gaining cultural insight translation accuracy checks of the pilot study and of transcriptions further redacted translation with a supervisor and interpreter continuity in collecting and transcribing the data 44 validity of results in studies of this type can be increased by participant validation this was not deemed feasible by the host due to illiteracy the location and burden on participants professional hierarchy may have influenced the discussion in the focus group being a white english female student researcher gave the pr an outsider position in the process 69 patients could have felt uncomfortable disclosing sensitive information to an outsider potentially resulting in caution over sharing information conversely they may have found it useful to talk to someone objective outside of their community and culture 69 participants seemed warm and open no adverse effect was reported conclusion bringing about behaviour change for the purpose of hiv control is a complex multifactorial process involving culture issues of inequality and lack of empowerment effective health care the law and politics 70 against this background this study shows that a lack of public knowledge of hiv is fuelling a culture of avoidance and fear of hivpositive men who have sex with men discrimination poses a substantial barrier to hiv testing access to care and treatment adherence culturally appropriate evidence based large scale educational campaigns are likely to help increase awareness of hiv mortality and dispel misconceptions that perpetuate discriminatory beliefs regional action is needed to provide highquality education to communities hiv should be presented as a treatable disease and transmission modes should be emphasised to change stigmatising beliefs parents and young people should be educated as a matter of priority workbased discriminatory policies should be identified and corrected in accordance with the law clinicbased travel reimbursement schemes should be trailed the role of media and of nongovernmental organisations including charities community groups business and faith based bodies could be explored societal acceptance of participants is likely to reduce experienced and perceived stigma of participants increase treatment adherence and may help to reduce hiv mortality and morbidity in hivpositive men who have sex with men in loreto mental health management in hivpositive men who have sex with men is a key priority supplementary information supplementary information accompanies this paper at 1186s1288902008745y additional file 1 interview and focus group topic guides abbreviations hiv human immunodeficiency virus art antiretroviral therapy unaids the joint united nations programme on hiv and aids aids acquired immunodeficiency syndrome hrh density human resources for health density hcps healthcare professionals rhol regional hospital of loreto pr principal researcher p participant us united states fg focus group pen peruvian nuevo sol sms short messaging services authors contributions jt cw acl gw and cra contributed to the study conception and design jt undertook data collection and the writing of the first draft material preparation and analysis were performed by jt cw acl and gw cra facilitated and oversaw data collection jt cw acl gw and cra commented on previous versions of the manuscript and approved the final manuscript authors information jt is a final year medical student at the university of birmingham this study was conducted as part of her intercalated bachelor of medical science degree in international health funding researcher travel costs and refreshments for the participants were funded by the university of birmingham this institution did not have a role in the design of the study the collection analysis and interpretation of data and in the writing of the manuscript competing interests the authors declare that they have no competing interests

background hivrelated incidence and mortality is increasing across peru with highest mortality rates recorded in the amazonian region of loreto this epidemic is concentrated in men who have sex with men a population with 14 hiv treatment adherence despite free national provision this study investigates barriers and facilitators to following healthcare advice through experiences and perceptions of hivpositive men who have sex with men and healthcare professionals in loreto methods twenty qualitative interviews with hivpositive men who have sex with men and one focus group with hivspecialist healthcare professionals were conducted in loreto januaryfebruary 2019 interviews were transcribed per verbatim thematic content analysis and deviant case analysis were used results a culture of isolation and discrimination was identified propagated by poor public knowledge surrounding hiv transmission and treatment employment potential was hampered and 720 patients had suicidal thoughts postdiagnosis barriers to care included shame depression travel costtimes a preference for traditional plantbased medicine and sideeffects of antiretroviral therapy facilitators included education family and clinic support disease acceptance and lifestyle changes conclusion more effective focussed community education and workplace discrimination investigations are recommended to reduce stigma and increase adherence to treatment in this population

reducing sexual prejudice interventions to reduce sexual prejudice a studyspace analysis and metaanalytic review since homosexuality was depathologised 40 years ago psychologists have been ethically committed to reducing sexual prejudice ethics codes continue to urge psychologists to strive against all forms of prejudice including that based on sexuality empirical evidence in favour of this ethical commitment has also grown considerably after the american psychiatric association decided in 1973 that homosexuality would not be considered a mental disorder lesbians gay men and bisexual people have poorer health and wellbeing outcomes than heterosexual people lgb people are oneandahalf times as likely to suffer from substancerelated mood or anxiety disorders as their heterosexual peers and are twice as likely to attempt suicide experiencing sexual prejudice is strongly associated with poor mental health outcomes most recently longitudinal studies have confirmed that sexual prejudice is indeed the cause of lgb peoples health disadvantage to ensure the wellbeing of lgb people sexual prejudice must be reduced however the effectiveness of psychological interventions in countering sexual prejudice is not well understood the individual and smallgroup interventions proposed by psychologists are often seen as ancillary to largescale social reform as morin put it the change of society will help more people than an army of psychologists working with them one by one literature reviews have often emphasised the methodological weaknesses of psychological studies in this domain and they have consequently shied away from drawing conclusions on the effectiveness of such interventions the present review aims to reducing sexual prejudice assess the achievements and shortcomings of psychological science in its pursuit of effective techniques to reduce sexual prejudice after a series of conceptual clarifications we proceed to map the wellexplored and neglected aspects of research in this area we then describe the interventions that have been employed to reduce sexual prejudice and we assess their effectiveness conceptual clarifications people with samegender attractions and relationships have been facing rejection throughout history in precolonial zimbabwe for example liaisons between men were often treated as a misdemeanour while in imperial korea samegender relationships were seen as being at odds with the existing social and religious order even where such relationships are accepted they are often regarded as ancillary to the heterosexual family both samegender love and the rejection thereof have been labelled and described in a number of ways 19 th century western psychiatry coined the term homosexuality to conceptualise samegender sexual attraction homophobia was later introduced to designate the rejection of homosexuality and it has now become widely used and accepted the notion of homophobia 1 emerged in the 1970s when social sciences reconsidered samegender sexuality in particular the idea that the gay community was a marginalised subculture emerged to counter the previous dominant model of homosexuality as a disease however homophobia has been criticised for a number of reasons throughout its fourdecade history first herek argues the term is inaccurate phobia is misleading in this context since it clusters a social attitude with anxiety disorders second as homosexuality with no other specifications is often reducing sexual prejudice used to refer to men homophobia may also focus attention on gay men and render lesbians invisible third speaking of homophobia and homophobes focuses research on psychological aspects concealing social and political implications 2 given the controversy around homophobia in this paper we opted for the more neutral sexual prejudice herek distinguished three levels or facets of the rejection of lgb people the individual the sociopolitical and the cultural he termed these three levels sexual prejudice heterosexism and sexual stigma respectively adam had previously remarked that studies on these three levels often have different philosophical assumptions and are characterised by considerable disciplinary insularity as for containing prejudice students of heterosexism and sexual stigma typically focus on largescale social and cultural change while prejudice researchers are concerned with designing individual and smallgroup interventions as we explained at the beginning of this paper the usefulness of the smallscale psychological interventions is unclear in a time of major social and institutional change therefore in this review we focus on sexual prejudice rather than heterosexism or sexual stigma in this paper we use the acronym lgb when referring to the targets of sexual prejudice however our original sources were often vague bisexual people are sometimes implied but rarely named explicitly other forms of sexuality are only now becoming visible to psychology while it is customary to see transgender people added to this list our article focuses strictly on prejudice based on sexuality transgender people who are also lgb may experience sexual prejudice in addition to cisgenderism previous reviews our systematic review is designed to inform future efforts within and beyond psychology to reduce sexual prejudice when research is not comprehensively integrated practitioners and policy makers have difficulty using it the volume of the literature and its inconsistent results often frustrate policy makers affecting both the prestige and the funding of psychological research and raising the risk of running unnecessary studies on questions that could be addressed by reassessing previous research there are only two reviews of sexualprejudice interventions and neither is comprehensive stevensons synthesis was thorough but it is now outdated more recently tucker and potockytripodi found that no intervention strategy for reducing sexual prejudice was adequately supported by the literature they speculated that the reticence of funding bodies might have hindered research on sexual prejudice however tucker and potockytripodi only considered published articles from a tenyear period the seventeen studies included in their review represent little more than one tenth of the relevant literature syntheses of prejudice research in general also address sexual prejudice but with understandable concision paluck and greens review of over 800 prejudicereducing interventions did not differentially discuss research on specific types of prejudice therefore this paper did not allow the reader to appraise whether a strategy described as effective was specifically tested in the case of sexual prejudice moreover this impressively broad review still covered less than onethird of the available literature on reducing sexual prejudice more focused reviews are available but they typically confine themselves to such specific interventions as panel discussions or gaystraight alliances pettigrew and tropps metaanalysis on the contact hypothesis also found that contact with lgb people reduced heterosexual peoples sexual prejudice interestingly the effect of contact on sexual prejudice was slightly stronger than on other forms of prejudice such as racism smith axelton and saucier performed a metaanalysis exclusively on contact and sexual prejudice and they also confirmed the effectiveness of this approach however no such review explored other methods of reducing sexual prejudice therefore a broad synthesis is needed metaanalyses and systematic reviews have become standard practice for disentangling the medical literature these methods have also proved valuable for social psychology more recently studyspace analysis has been proposed for identifying underexplored keyissues in the case of sexual prejudice reduction the volume and diversity of the literature suggest the need for research integration the present review the aim of this review is to assess practical strategies to reduce sexual prejudice we consider studies regardless of disciplinary boundaries theoretical underpinnings and study design and setting however as our focus is on intervention studies we excluded correlational research we also excluded all qualitative research the methods and results of which are usually not commensurable with those of quantitative studies through these exclusions and restrictions we aimed to review a meaningful and coherent body of studies in a feasible way the present study draws on three complementary approaches to assessing and integrating scientific evidence first a thorough search of the literature was performed in accordance with the cochrane guidelines for systematic reviews reducing sexual prejudice second a study space analysis was performed in order to identify the issues that have been satisfactorily addressed by these studies and the issues that need further research et al proposed study space analysis as a procedure for identifying regions of concentration and inattention in a field of research a study space is a matrix in which lines and columns represent study characteristics eg whether the research was experimental or whether the participants were students each entry of the matrix represents the number of studies that exhibit the corresponding pair of characteristics eg how many studies were experiments performed on students an inspection of the studyspace matrix can indicate the issues that have been neglected as the corresponding cells will have visibly low counts and inferential statistics can elucidate whether the distribution of the studies across the study space is uneven malpass systematic reviews can sometimes point out underexplored issues but studyspace analyses allow for quantification and increased rigour third we performed metaanalytic reviews on clusters of studies that used a similar approach to reduce sexual prejudice effect sizes were computed for all reports that provided sufficient information however following the advice of borenstein hedges higgins and rothstein we only computed summary effect sizes when the studies within a cluster were both sufficiently similar and numerous in all other cases we reported and discussed the effect sizes of individual studies the systematic search of the literature literature search our search for relevant literature followed the recommendations of the cochrane handbook for systematic reviews of interventions these guidelines demand a systematic quasiexhaustive strategy for collecting both published and unpublished reports a transparent a priori protocol for selecting the relevant studies and a reducing sexual prejudice composition of their sample therefore no study was excluded on such grounds only those interventions were included that targeted sexual prejudice in heterosexual people however we also included both those studies that had a minority of lgb participants and those that did not explicitly state their participants sexuality intervention reports were included in the review provided that they described at least one intervention purposefully performed by a person or group they offered quantitative data reflecting the outcome of that intervention and the intervention was performed in order to modify reactions to homosexuality we therefore excluded correlational studies and surveys but we did not exclude interventions that resulted in an increase in sexual prejudice control studies using quantitative methods were included such as experiments and quasiexperiments as explained in the introduction we excluded all qualitative research from this review outcomes studies with outcome measures that reflected participants reactions to homosexuality were included in this context homosexuality could refer to sexual behaviour or desire involving people of the same gender to individuals and groups to whom such behaviours and desires are attributed or simply to the term and its individual meanings exclusion decisions the database searches returned approximately 40000 references the titles and abstracts of these reports were screened based on the inclusion criteria described above since this screening was performed by the first author alone we assessed the reliability of the criteria a batch of 100 articles was compiled using psycinfo the first author and a reducing sexual prejudice research assistant independently applied the criteria and rated each article as either included or excluded we opted for gwets ac1 statistic over the more popular cohens κ because ac1 gives a better estimate of intercoder agreement when the baseline frequencies of the categories are greatly unequal in our case over 90 of the studies were excluded by both coders if we had used cohens method this would have lead to a substantial overestimation of the probability of random agreements and a subsequent underestimation of the reliability coefficient gwets ac1 estimates the proportion of random agreements based on binomial probabilities but it is otherwise identical to cohens κ the interrater agreement on exclusion decisions was good gwets ac1 96 se 02 p 001 in a debriefing discussion the two researchers agreed that the criteria were unambiguous and that inclusion and exclusion decisions could be effectively made by the first author working alone after the literature search we retained 238 references most of these were available through at least one of several academic libraries where we are members thirtyone journal articles were obtained through interlibrary loans six articles were consulted by courtesy of the authors and five dissertations were purchased five reports were deemed irretrievable eightytwo reports did not present any relevant intervention andor outcome three were dissertations also published as journal articles and two were duplicates the resulting corpus comprised 146 reports the selection process is summarised in figure 1 the full list of included studies is given in the online supplement table s1 the study space analysis analytic strategy we performed the study space analysis on 146 published and unpublished reports on a total of 159 studies the aim of this study space analysis was twofold first we aimed to describe the studies by looking at the pico characteristics the populations sampled the reducing sexual prejudice interventions tested the designs employed and the outcomes examined we also recorded the publication status of the reports the year of publication or submission and whether they received funding second we explored the associations between study characteristics by crosstabulating variables to obtain studyspace matrices we then computed pearsons χ²s standardised residuals and goodmans γs in order to examine associations between study characteristics most tables include cells that are either empty or which have expected values smaller than five in these instances χ² tests have diminished power and nonsignificant results should be interpreted with caution we also compared groups of studies on continuous variables such as sample size and mean sample age none of these continuous variables were normally distributed all skewness zs 489 ps 001 and kurtosis zs 294 ps 01 therefore we used nonparametric tests data coding we developed a coding scheme in order to systematically extract data about the studies in addition to information related to the pico criteria we also included basic bibliographic data the variables we constructed in order to extract information from the reports are described in the rest of this section 3 the first author coded the studies alone fifteen studies were independently recoded by the second author to check the reliability of the procedure for the reasons explained above we opted for gwets ac1 coefficient to quantify intercoder agreement on categorical variables we computed intraclass correlations continuous variables and a goodmans γ for our only ordinal measure intercoder agreements were good for both categorical and continuous variables population to characterise the sample we recorded the number of participants the reducing sexual prejudice proportion of women and the country in which the study took place we recorded both the average age of the sample as reported by the authors and the age group to which the participants belong classified as children teenagers young adults adults and older adults the presence or absence of data on race and ethnicity was recorded as well as the proportion of white participants where available participants sexuality was coded either as all heterosexual when heterosexuality was a selection criterion for the study as mixed when both heterosexual and lgb people participated or as unreported when this was the case the intercoder agreement was very good for both continuous and categorical variables intervention we classified interventions into fourteen categories paluck and green described twelve types of intervention to reduce prejudice although they did not provide a list or comprehensive definitions our own operational definitions are given in table 2 we added a residual category for studies comparing two or more approaches to reducing sexual prejudice and the crossover category of contactpluseducation studies the reliability of classifying the approaches to sexual prejudice reduction was assessed on a sample of 39 reports the intercoder agreement was very good gwets ac1 86 p 001 comparison to assess research designs we coded the type of comparison used by each study on a fourpoint scale based on cook and campbells seminal assessment of experimental and quasiexperimental research we constructed an ordinal measure of a studys internal validity specifically we coded the type of comparison used by each study on a fourpoint scale the intercoder agreement was very good goodmans γ 97 p 001 the presence of any followup test was recorded as a separate variable outcomes we labelled as attitudinal all sexual prejudice scales such as the attitudes towards lesbians and gay men scale these measures all assessed attitudes ie a general positive or negative orientation towards a social object when a measure specifically explored behavioural cognitive or emotional aspects of prejudice we classified it as such measures of attitudes towards specific issues were recorded but not used in this study behavioural measures included not only actual behaviour but also behavioural intentions common examples of behavioural measures included professionals responses to case vignettes surveys of intended behaviour and participants willingness to help gay people in reallife situations verbal behaviour was also classified as a behavioural outcome when participants used speech or writing for a specific end rather than to report their own thoughts and feelings we classified as cognitive all outcome measures of stereotypes and other beliefs about gay lesbian and bisexual issues knowledge about homosexuality and other measures that explicitly targeted cognition were also included in this category emotional measures included all the instruments assessing participants feelings towards homosexuality or lgb people these were typically selfreport measures that assessed the extent to which participants felt fear anger disgust or other emotions in response to homosexuality implicit measures attempted to assess participants reactions without relying on selfreport often in order to bypass their need for favourable selfpresentation typical implicit measures were implicit associations tests and galvanic skin reducing sexual prejudice responses bibliographic information each article was identified by the surname of the first author and the year of publication for unpublished reports the year of submission or completion was recorded we also coded the type of the report and whether it was published where applicable the journal title was recorded we also noted whether the study was funded population a total of 19782 people participated in the 159 studies the median sample size was of 92 people where demographics were reported participants were mostly female young and white in 8 of the cases no information was given on participants gender and only 56 of the studies described the samples ethnic composition one hundred and thirtyeight studies were performed in north america twelve in western europe four in the middle east and south asia three in australia and one in africa no studies were performed in south america eastern europe east asia or oceania six studies were conducted with teenagers 18 with adults and 134 with young adults no studies were conducted with children or older adults while the participants age group was almost always clear the mean age was only reported in half of the studies sample mean ages ranged from 14 to 44 years one hundred and thirtynine studies employed undergraduate students as participants the researchers assembled a confirmed heterosexual sample in only 29 of the studies 57 of the studies did not report participants sexuality while the remaining 14 acknowledged the inclusion of a number of lgb participants interventions we classified the studies according to 12 different types of prejudicereducing reducing sexual prejudice interventions following paluck and green many studies used some form of education as an intervention several studies employed lgb guest speakers and thus combined education with intergroup contact contact with lgb people was also used outside of an educational context in a number of studies other studies examined effects of making tolerance a social norm either through experts statements or peers opinions inducing specific emotions entertainment media priming techniques awareness and suppression and accountability four approaches identified by paluck and green were not represented cognitive training for children peer debates cooperative learning and the manipulation of social categorisation finally 15 studies compared the effectiveness of two or more approaches next we asked whether studies that examined different forms of prejudice reduction differed in their samples characteristics groups of studies using the same approach to prejudice reduction did not differ in terms of their sample size kruskalwallis h 9 comparison recall that the robustness of the study design was operationalised as a fourpoint ordinal variable ranging from no comparison to comparison of randomised groups in 70 studies participants were randomly assigned to two or more groups 36 studies had both pretests and nonrandomised control groups 50 studies had either pretests on nonrandomised control groups and in the remaining 3 studies only postintervention data were reported without any term of comparison twentyfive studies reported reducing sexual prejudice followup results outcomes recall that dependent measures were classified as attitudinal behavioural cognitive emotional and implicit most studies used some form of attitudinal measure behavioural cognitive and emotional measures were each used in less than one fifth of the studies less than 3 of the studies employed implicit measures such as implicit associations tests and galvanic skin responses outcome measures typically referred either to both lesbians and gay men or to lgb people more generally nine studies exclusively dealt with gay men two studies focused on lesbians and eight studies compared sexual prejudice directed at men and at women only four studies specifically addressed prejudice against bisexual people publication and funding the majority of the reports were retrieved through searches in electronic databases the rest were identified through previous reviews key researchers google searches hand searches of relevant journals and a suggestion from an anonymous reviewer these reports were journal articles unpublished dissertations differed on characteristics related to study design all unpublished studies in this corpus were performed in the us there were no significant differences between published and unpublished studies in the types of interventions used or in participants age group sexuality or student status all χ²s were nonsignificant the comparison of published and unpublished studies revealed two unexpected differences unpublished studies tended to employ more robust designs than published studies goodmans γ 55 p 001 furthermore 29 of the unpublished studies followed up on the longterm effectiveness of the intervention as opposed to only 12 of the published studies χ² 559 p 05 jointly these two findings suggest the surprising conclusion that unpublished studies are more rigorous in some respects than the published ones finally we examined the differences between funded and unfunded studies on pico characteristics funded studies were more likely to be conducted outside the us χ² 550 p 05 and to recruit maleonly samples χ² 1046 p 01 the standardised residual z 285 p 01 the design of funded studies was not more robust goodmans γ 37 p 05 studies employing different approaches were not equally likely to receive funding χ² 2186 p 01 specifically contactpluseducation studies were never funded z 206 p 05 there were no other meaningful differences between funded and unfunded research in terms of sample size participants characteristics design or outcome measures all χ²s 3 ps 05 and mannwhitney zs 196 ps 05 metaanalytic reviews analytic strategy in order to appraise the effectiveness of interventions for reducing sexual prejudice we used metaanalytic tools effect sizes were computed for each study that provided 20 reducing sexual prejudice sufficient information we grouped studies based on intervention strategies and outcome measures we computed a summary effect size for every such group of studies unless there were further reasons to discuss the studies separately all metaanalytic procedures followed the guidelines of borenstein et al and field and gillet we proceeded in four stages first cohens d was computed as a measure of effect size for each study we aimed to compute ds using the best available information when means and standard deviations were not available we used transformations of the statistical values provided in the report if the number of participants in different groups was not provided the groups were assumed to be equal in size when a study had more than one type of dependent variable we computed effect sizes for each outcome effect sizes were computed with the online calculator provided by lipsey and wilson in situations not covered by this website we applied borensteins et al formulae by hand our computations were always based on posttest scores followup results were rare and they were not used in this metaanalysis in accordance with conventional benchmarks effect sizes were interpreted as small medium or large second we computed the summary effect size 4 relying on a randomeffects model we opted for random effects over fixed effects due to the great variety in our database of studies while the interventions often relied on similar principles each team of researchers used a customised set of procedures and interventions therefore we found it more reasonable to assume that the effect sizes reflected a variety of true effects rather than all being approximations of a single true effect all computations were performed using the ibm spss statistics syntax provided by field and gillet reducing sexual prejudice third the heterogeneity of the effect sizes was assessed to achieve this we computed the weighted sum of squares q and the proportion of excess dispersion i² the q statistic reflects the total variance of the effects subsumed by one summary effect size it is interpreted as a χ² with degrees of freedom equal to the number of studies minus one if q is statistically significant the studies are more heterogeneous than expected and the summary effect size should be interpreted with caution the i² statistic returns the percent on dispersion that exceeds the expected value conventionally values above 25 indicate a noteworthy excess dispersion if a group of studies is heterogeneous the sources of this heterogeneity should be identified through moderator analyses none of the groups of studies we metaanalysed showed significant heterogeneity therefore no moderation analyses were performed in order to visualise the dispersion of the effect sizes and their confidence intervals we constructed forest plots with graphpad prism version 600 for windows fourth we assessed the potential effect of publication bias on our results publication bias refers to the tendency of researchers and journal editors to publish only significant results a tendency that leads to the overestimation of effects in metaanalyses following begg and mazumdars method we computed the correlation between effect sizes and their respective standard errors a significant correlation would indicate a potential publication bias we also computed rosenthals failsafe number ie the number studies with nonsignificant results that would be necessary to reduce a summary effect size to 0 a summary effect size was not always computed within certain classes of interventions studies were too diverse to allow for a meaningful summary effect size in these cases only the direction of the effect was considered and a sign test was performed reducing sexual prejudice in the rest of this section a heading is dedicated to each type of intervention since the handful of studies on implicit measures and on prejudice towards bisexual people were scattered across different types of interventions we review them under a separate heading the only study on accountability is also discussed in that section education ignorance is probably the most often cited cause of prejudice therefore it is not surprising that education is the most frequently used technique for reducing sexual prejudice almost all of the studies in our corpus were performed in an educational setting whether in a course or workshop or in a university laboratory however we defined an intervention as educational only when the transfer of information and skills was the main means for reducing sexual prejudice thirtytwo studies examined the effect of education on sexually prejudiced attitudes see figure 2 five studies tested the effect of education on knowledge about gay people and issues see figure 3 for a forestplot of individual effect sizes the mean effect size was very large d 109 se 013 the effect sizes of the five studies were not significantly heterogeneous q reducing sexual prejudice 419 p 05 the variance among the true effect sizes only accounted for small proportion of the observed variability i² 454 there was no sign of a publication bias beggs and mazumdars τ 60 p 05 rosenthals failsafe number was 184 furthermore boulden and scher both found that educational programmes strongly increased peoples selfperception of knowledge d 101 se 009 and d 121 se 023 respectively unsurprisingly education was highly effective in increasing knowledge about homosexuality five studies tested the effect of education on emotions see figure 4 for a forestplot of individual effect sizes the summary effect size was smalltomedium d 036 se 005 there was no evidence for heterogeneity among the effect sizes since the weighted sum of squares was less than expected q 372 p 05 i² 0 there was no evidence for publication bias begg and mazumdars τ 20 p 05 rosenthals failsafe number was 66 story examined the effect of a sexuality course on students comfort with a series of sexual behaviours different questions yielded different results ds ranging 046 to 066 overall education effectively reduced sexuallyprejudiced emotions contact intergroup contact is arguably the most researched approach to prejudice reduction its results are welldocumented and its mechanisms are reasonably well understood moreover sexual prejudice may be the prejudice on which intergroup contact has the strongest effect heterosexual peoples contact with lgb people often occurs through disclosure by friends or family which is more effective in reducing prejudice than disclosure by new acquaintances eight studies examined the effect of contact with lesbians and gay men on sexually prejudiced attitudes see figure 5 for a forestplot of individual effect sizes the mean effect size of these interventions was medium d 056 se 016 there was no evidence of reducing sexual prejudice heterogeneity among the studies q 941 p 05 the proportion of true variance was i² 2562 there was no evidence for publication bias begg and mazumdars τ 50 p 05 rosenthals failsafe number was 115 intergroup contact was moderately effective in reducing sexually prejudiced attitudes three studies investigated the effect of contact with lgb people on emotions lance found that contact greatly reduced students discomfort with lgb people d 107 se 032 turner crisp and lambert found that imagining an interaction with a gay man has a similarly large effect on straight mens intergroup anxiety d 143 se 043 however burke obtained a much more modest effect by exposing participants to a video of a counterstereotypical gay man d 015 se 019 although all three studies found positive effects they were too few to grant a conclusion z 115 p 25 only one study explored the effect of contact on sexually prejudiced cognitions in their imagined contact study turner et al achieved a great reduction of straight mens conviction that gay men are all similar d 084 se 040 contactpluseducation education and intergroup contact were often used together in such a manner that it was impossible to differentiate their effects the prototype of contactpluseducation interventions is the panel presentation a group of lgb people are invited to a class or a workshop in order to provide information on sexuality answer participants questions and provide an experience of positive intergroup contact twentyseven studies assessed the effect of contactpluseducation on sexually prejudiced attitudes see figure 6 for a forestplot of individual effect sizes the mean effect size was medium d 041 se 006 there was no evidence for heterogeneity q 2666 p 05 i² 247 there was also no evidence for a publication bias begg and mazumdars τ 05 p 05 rosenthals failsafe number was 1407 interventions combining contact and reducing sexual prejudice education had a medium effect of sexually prejudiced attitudes three studies examined the impact of contactpluseducation on knowledge cramer found that a workshop on sexuality in which the facilitator disclosed her lesbian identity strongly improved socialwork students understanding of lesbian identity development d 109 se 022 kelley chou dibble and robertson found that a workshop that included contact with lgb physicians was moderately effective in dispelling healthcare students misrepresentations of lesbian and gay health d 036 se 012 fisher obtained a similar result through a course for teachers in which contact was provided through videos d 040 se 038 although all three studies found positive effects they are too few to grant a conclusion z 115 p 25 six studies examined the effect of contactpluseducation on emotions see figure 7 for a forestplot of individual effect sizes the summary effect size was medium d 044 se 008 there was no evidence for heterogeneity among the effect sizes since the weighted sum of squares was less than expected q 474 p 05 i² 0 there was no evidence for publication bias begg and mazumdars τ 33 p 05 rosenthals failsafe number was 82 contactpluseducation was effective in reducing sexually prejudiced emotions five studies assessed the effect of contactpluseducation on intended behaviour see figure 8 for a forestplot of individual effect sizes the summary effect size was small to medium d 035 se 009 there was no evidence for heterogeneity among the effect sizes since the weighted sum of squares was less than expected q 227 p 05 i² 0 there was no obvious risk of publication bias begg and mazumdars τ 20 p 05 5 rosenthals failsafe number was 21 two studies that used actual behavioural tasks achieved more modest results hugelshoffer asked students to spend time with allegedly lgb peers those who had attended a panel presentation were slightly more willing to do so but the effect size differed by the type of activity proposed average d 014 se 002 reducing sexual prejudice grutzeck and gidycz used a similar behavioural measure but students who had attended a panel presentation were actually less willing to interact with lgb peers d 007 se 019 social norms and expertise prejudice can be reduced if tolerance is set as a norm either by a reference group or by experts the normsorexpertise interventions we review here adopted one of two strategies some studies particularly those drawing on moscovicis minorityinfluence paradigm manipulated the source of the norm ie the type of group that advocated tolerance other studies manipulated the contents of the norm ie whether sexual prejudice was legitimised or condemned five studies examined the effect of the source of normative influence on sexuallyprejudiced attitudes see figure 9 for a forestplot of individual effect sizesthe mean effect size was close to nil d 002 se 001 the effect sizes were not heterogeneous q 071 p 05 i² 0 there was no sign of publication bias 6 begg and mazumdars τ 20 p 05 however effect sizes could not be computed for four relevant studies these results suggest that normsorexpertise interventions that rely on the prestige of the source are not effective in reducing sexually prejudiced attitudes four studies tested the effect of manipulating norm contents on sexuallyprejudiced behaviour see figure 10 for a forestplot of individual effect sizes the mean effect size was medium d 046 se 013 the effect sizes of the four studies were not significantly heterogeneous q 320 p 05 the variance among the true effect sizes only accounted for a small proportion of the observed variability i² 618 there was no sign of a publication bias begg and mazumdars τ 67 p 05 rosenthals failsafe number was 37 tolerant social norms had a medium effect on participants behaviour reducing sexual prejudice two studies explored the effect of norms on emotions banse seise and zerbes found that expert messages did not affect german male students sexually prejudiced emotions d 002 se 032 pereira monteiro and camino inducing emotions researchers have successfully reduced prejudice by inducing empathy towards a discriminated group or by otherwise manipulating participants emotions certain interventions in our corpus employed empathyinducing exercises other studies investigated the effect of disgust on sexual prejudice five studies explored the effectiveness of empathyinducing exercises in reducing sexual prejudice both maclaury and israel and hackett have obtained some reduction of students sexuallyprejudiced attitudes through such exercises d 029 se 023 and d 030 se 019 respectively unsurprisingly the same exercise employed by israel and hackett had a very modest effect on knowledge d 005 se 022 hillman and martin created an exercise named alien nation in which students had to imagine living on a planet where all forms of sexuality are forbidden they obtained a larger reduction of sexuallyprejudiced attitudes with this task than with a lecture d 017 se 030 hodson choma and costello also found that alien nation was more effective than a lecture in reducing negative emotions d 045 se 018 nevertheless these results are insufficient to indicate a positive trend sign test z 089 p 375 the manipulation of disgust was pursued in three studies with interesting results reducing sexual prejudice participants in whom disgust was induced had more prejudiced responses both on the iat and on an emotional thermometer in contrast disgust was associated with a slight decrease of sexually prejudiced attitudes entertainment media entertainment media have long been assumed to have an impact on prejudice novels television shows films and other forms of entertainment have often been used by activists and policy makers aiming to contain prejudice and counter stereotypes empirical evidence on the effectiveness of this approach is mixed but generally promising all 11 studies in this category employed some form of audiovisual entertainment books were almost never used with the notable exception of a qualitative study we excluded from our sample musical and theatrical performances such as the laramie project were used in a handful of studies but only to facilitate a broader educational curriculum the entertainment studies used a wide range of genres including documentary films talkshows and pornography effect sizes could be computed for 11 studies the effect sizes ranged from d 026 to 061 with one study having an exceptionally large effect of 135 the contents of the videos used as well as the research designs were too heterogeneous to compute a summary effect size the sample was also too small to explore what differentiates effective and ineffective interventions however a sign test indicated a tendency for entertainment to have a positive effect z 300 p 004 priming techniques priming people on tolerant values has been reported to reduce prejudice both in the 29 reducing sexual prejudice laboratory and in more natural settings the mechanism behind this effect seems to be peoples need to maintain consistency among their attitudes and a sense of positive selfworth most studies value priming investigated how priming participants on socially conservative values prompted more sexually prejudiced responses five studies tested the effect of value priming on sexually prejudiced attitudes lehmiller law and tormala performed three studies in which they affirmed participants on the importance of family and on other values priming family values induced a small increase in sexually prejudiced attitudes compared to no priming d 009 se 020 and d 013 se 018 and a moderate increase compared to priming participants on humour d 054 se 018 and d 053 se 024 humour also proved moderately effective in reducing sexual prejudice compared to no priming d 044 se 018 webster and saucier performed two studies to test whether thinking about ones mortality increases sexually prejudiced attitudes the overall effect was close to nil d 001 se 006 but there was a complex pattern of interactions bondsraacke cady schlegel harris and firebaugh found that instructing participants to remember positive gay characters on television moderately improved attitudes towards gay men d 044 se 019 three studies investigated the impact of priming values on affective sexual prejudice two studies by webster and saucier found a complex pattern of gender differences but the overall effect of mortality salience was close to nil d 001 se 011 johnson found that a lexical priming task with religious content leads to more affective sexual prejudice than the same task with neutral content d 051 se 023 awareness and suppression becoming aware of ones prejudice and attempting to consciously control it has been reducing sexual prejudice a controversial topic in the history of social psychology while allport was optimistic about this strategy subsequent experiments have shown paradoxical effects attempts to suppress prejudiced thoughts have been shown to induce more prejudiced thoughts and behaviour in some contexts five studies have examined the effect of awareness and suppression on sexual prejudice kennedy used a selfconfrontation technique with a large number of american students this technique achieved a medium reduction of participants scores on the atlg d 043 se 003 monteith spicer and tooman performed two studies examining the rebound effect described above in both studies they achieved an average reduction of the number of prejudicial statements by simply instructing participants to avoid them d 049 and 050 se 005 and 004 respectively moreover neither of the studies found a rebound effect banse et al similarly found that the conscious suppression of sexual prejudice was very effective for both attitudes d 077 se 033 and emotions d 135 se 033 in an interesting experiment gailliot peruche pant and baumeister offered participants sucrose drinks before writing an essay about a gay character although participants did not receive any instructions to suppress prejudice those who drank the sucrose drink used fewer stereotypes d 064 se 008 the authors interpreted these findings as indicative of the role of the brains glucose supply in consciously controlling behaviour all five studies relying on awareness and suppression achieved an average reduction of sexually prejudiced responses as these studies were different in their methods and scope we decided not to compute a summary effect size a sign test indicated that the probability of five out of five studies having positive results is fairly low it does not however achieve conventional statistical significance z 186 p 063 reducing sexual prejudice morin in what was seemingly the first attempt to reduce sexual prejudice through a psychological intervention also addressed attitudes towards bisexual people he combined contact and education to induce a large reduction in social distance to bisexual people d 062 se 007 hugelshoffer also performed a contactpluseducation intervention and achieved a small reduction in antibisexual prejudice d 016 se 010 dessel used a similar approach and achieved a medium effect d 042 se 033 finally bronson employed empathetic stories to induce tolerance towards bisexual people but observed the opposite effect d 018 se 016 general discussion the present review examined patterns in the methodology participant characteristics and theoretical approaches of interventions to reduce sexual prejudice education contact contactpluseducation and normsorexpertise interventions effectively reduced participants scores on at least some measures of sexual prejudice entertainment with antiprejudice content produced promising results but the studies were too diverse to support an overall conclusion the outcomes of the interventions were typically assessed by the use of selfreport sexualprejudice scales sometimes accompanied by emotional cognitive or behavioural measures and the use of implicit measures was rare participants in these studies were typically young american women enrolled in education however the reports often failed to offer detailed information on participants characteristics including participants sexuality most approaches to prejudice reduction were explored in the case of sexual prejudice but no study in our corpus carried out socialcategorisation experiments cognitive training or peer debate prejudice towards bisexual people was largely neglected finally unpublished postgraduate research showed a number of advantages over published research below we discuss these findings in more detail looking at both the conclusions we can draw and the issue that are yet to be researched reducing sexual prejudice the effectiveness of the interventions the metaanalytic review showed that the effectiveness of at least four types of interventions to reduce sexual prejudice is supported by the literature educational interventions are highly effective in increasing knowledge about lgb people their effectiveness in improving attitudes and emotions is more modest but solid contact with lgb people has a moderate positive effect on attitudes interventions that integrate contact and education are moderately effective in improving attitudes emotions and behavioural intentions in relation to gay people finally inducing tolerant social norms can moderately improve behaviour but not attitudes see table 3 for details overall the change induced by these four interventions was of about one third to one half of a standard deviation in size and there was little variation across interventions and outcomes this is not to say that the characteristics of the interventions do not matter the effect sizes of individual studies ranged from nil to very large and it is therefore intuitively likely that there are meaningful differences among the studies however the effect sizes were too homogeneous to reveal particular moderators of effectiveness future research on more diverse samples may reveal important differences between cultures and between age groups two outcomes however do not fit the overall pattern of medium effects first educational interventions had an particularly large impact on knowledge about sexuality second normsorexpertise interventions had a medium effect on behaviour but had no effect on attitudes the second of these patterns is difficult to interpret since researchers who manipulated the source of the message typically used attitudinal measures while researchers who manipulated the contents of the message employed behavioural measures future research should explore if behaviour is more susceptible to normative influences or the contents of a norm is more relevant than its source reducing sexual prejudice sampling and design issues this review revealed that scientific knowledge about reducing sexual prejudice has drawn on a very narrow research base in psychological research studies are generally conducted with young north american students eightynine percent of the studies in our review employed north american samples arnett found no apa journal with more than 81 american content between 2003 and 2007 although we searched for studies from all over the world 833 of the samples in our corpus were drawn from the us for the same period the oversampling of american participants is problematic because psychological studies often have substantially different results when conducted with american or nonamerican populations focusing on young educated americans is especially problematic in prejudice research the us is among the less sexually prejudiced nations according to the world value survey 313 of americans stated that homosexuality is never justifiable as opposed to 90 of georgians and 992 of jordanians predominantly researching young people is also problematic north american youths tend to be more accepting of homosexuality than their elder the oversampling of women and the failure to report the samples gender composition further troubles the generalisation of findings from these studies men have been shown to be more sexually prejudiced than women in multiple studies and this difference is especially large among college students students who volunteer to participate in sexuality related research also have more sexual experiences and less restrictive values than their peers in conclusion the extant literature has studied sexual prejudice on a population that is comparatively unlikely to hold such prejudice consequently research has addressed intervention strategies that may not be easily reducing sexual prejudice transferable to other populations where such interventions are needed the most we strongly urge the diversification of this field of research in order to guide prejudicereduction efforts in other populations promising approaches to prejudice reduction were also left unexplored by the studies in our corpus social categorisation cognitive training and peer debate have had promising results in reducing prejudice based on race and ethnicity however no study seems to have explored the utility of any of these approaches in combating sexual prejudice intergroup contact has a particularly large effect on sexual prejudice and there is a possibility that other approaches to prejudice reduction would also be very effective future studies will need to investigate whether this is the case like other reviews we found that researchers in this area did not always record their participants sexualities while lgb people may foster negative thoughts and feelings about their sexuality they are still on average vastly more positive about homosexuality than their heterosexual peers researchers often rely on the assumption that lgb people are few in number and therefore unlikely to participate in their studies or to affect their statistical conclusions however there are both theoretical and empirical reasons to insist on accounting for participants sexuality in such research lesbians gay men and bisexual people can be surprisingly common among volunteers for sexuality research assuming by default that people are heterosexual is central to heterosexism and sexual stigma ironically this assumption is frequently made in conducting the very studies that aim to reduce sexual prejudice sexual prejudice has most often been operationalised in terms of specific sexual prejudice scales while implicit measures such as the iat have been used very rarely the use reducing sexual prejudice of standardised scales has obvious advantages but it can have unintended effects on the way sexual prejudice is understood selfreport scales rely on the assumption that people can and will express their prejudice which is not always the case while sexual prejudice scales largely overlap they tend to obscure specific aspects of prejudice such as fear of outgroups or the rejection of bisexual people the neglect of antibisexual prejudice is particularly concerning since bisexual people are subject to more stress than their lesbian and gay peers the value of unpublished studies one of the most surprising findings from our studyspace analysis is that methodologically strong studies often go unpublished there is approximately one dissertation for every seven journal articles archived on psycinfo in general however in our corpus there is one dissertation for every three articles these unpublished reports often present significant differences and a publication bias in favour of positive results does not seem to explain this pattern a general bias against postgraduate research is a second possibility of course postgraduate students do not all publish their work but this explanation cannot account for the prevalence of the methodologically stronger studies in the unpublished literature a third possibility is that scholars in this particular field are affected by courtesy stigma psychologists doing research on sexuality often face stigma by association and they may be automatically labelled as lgb themselves younger researchers may be particularly affected by courtesy stigma such that good quality dissertations on sexual prejudice are not developed for publication this explanation is consistent with observations that postgraduate researchers in lgb psychology are concerned about the effect of courtesy stigma on their future career such reducing sexual prejudice young researchers find experiences of mentorship in lgb psychology to be surprising and transformative but such mentorship may be difficult to access whatever the explanation much good research on sexual prejudice seems to remain unpublished and this is particularly concerning in a field that remains small and which carries ethical obligations from psychologys past finally a larger proportion of nonus studies than usbased studies were funded studies performed outside the us were comparatively rare and this finding may be a statistical artefact alternatively funding bodies in other countries may be more willing to fund research on reducing sexual prejudice than their us counterparts conversely there may be so little support for this topic outside the us that research is hardly ever completed or published apart from the handful of projects that manage to secure funding limitations and future research no review can be complete but we took several precautions to assure that we included as many of the relevant studies as possible we sampled dissertations performed google in addition to data collection more research integration is also necessary for the sake of coherence we limited our review to exclude followup studies and qualitative research but our searches suggested that both bodies of work could be reviewed in the future sexual prejudice itself has many intertwined aspects that are beyond the scope of our review although we recognise their importance specifically our knowledge of how to reduce sexual prejudice would be more complete if we better understood how to reduce lgb peoples prejudice towards themselves as well as the strategies they use to cope with prejudice and discrimination it is equally important to understand prejudice directed towards heterosexual people who combat sexual prejudice as we have seen above courtesy stigma may actually be hindering research in this field we hope that wellsynthesised research on all these issues will emerge in the near future lastly but importantly our review remained silent on the theoretical underpinnings of interventions to reduce sexual prejudice as this review reveals the development of practical antiprejudice strategies has often had a loose relationship with theory and research educational interventions for example are often informed by our societys view of prejudice as rooted in ignorance rather than a more sophisticated theory of how prejudice works however it is not uncommon for intervention studies to proceed with theoretical research following years later allports contact hypothesis gained prominence during the 1960s struggle for africanamerican civil rights three reducing sexual prejudice decades before its underlying mechanisms were clarified by gaertner mann dovidio murrell and pomare nevertheless understanding the psychological mechanisms behind each of these strategies is of both scientific and practical importance since increasing the effectiveness of a practical technique requires theoretical understanding intervention mapping provides tools for synthesising research and integrating it with theory with excellent results in health psychology interventions therefore we feel that intervention mapping performed on different practical strategies could bring major advances in our understanding of reducing sexual prejudice we intended our review as a first step toward such deeper inquiries conclusion the first 40 years of psychological research on reducing sexual prejudice has produced reliable knowledge but it has also neglected several promising approaches and many relevant demographic groups future research should explore cultural and age differences systematically in order to design antisexual prejudice interventions for populations that are more in need of them than are typical american college students filling in the gaps of this literature is obviously intertwined with issues of funding and dissemination limited resources are the typical reason for performing research on convenience samples the neglect of certain approaches and certain outcome measures may have similar underpinnings cognitive training and implicit prejudice are comparatively resourceintensive to research moreover postgraduate researchers seem to face particular difficulties in completing and publishing their work on this topic we therefore conjecture that the current weaknesses in our knowledge about sexual prejudice may be due to a lack of systematic support for research in this area which may be partially due to sexual prejudice itself while we agree with other reviewers that the literature on reducing sexual prejudice has 40 reducing sexual prejudice serious limitations we have reason to see this field in a brighter light while tucker and potockitripodi found a handful of studies many of which had questionable designs we managed to identify over one hundred and fifty studies almost half of which were randomised experiments most of these studies were successful to some extent in reducing sexual prejudice and metaanalyses show that effect sizes were typically in the medium range much research was conducted by postgraduate students often without the recognition that comes with publication while the limitations discussed above commend caution and future investigations the literature we have reviewed also evidences psychologys ethical commitment to understand and reduce sexual prejudice reducing sexual prejudice norms or expertise information on how prejudice is viewed by either experts or a significant group inducing emotions exercises that directly target participants emotions towards lgb people including the facilitation of empathy note this classification is based on paluck and green priming techniques reducing sexual prejudice participants who had listened to a lecture on sexuality had a much lower skin response when an openly gay experimenter touched them d 080 se 028 banse et al employed the iat to compare the effect of the intentional suppression of prejudice and that of a progay message by experts the data was not reported in sufficient detail due to the lack of any significant differences dasgupta and rivera found that contact with gay people through biographical vignettes had a medium positive impact on sexual prejudice as measured with the iat d 030 se 018 dasgupta et al book society and the healthy homosexual however the term was in use earlier a fact readily acknowledged by weinberg himself the earliest academic paper using this word seems to be kenneth smiths homophobia a tentative personality profile 2 note that homosexuality had previously enabled a similar focus on the individual psyche at the expense of other issues 3 only the variables used in the final version of this paper are reported here the initial coding scheme which is slightly more detailed is available from the authors upon request

we wish to thank ellie brodie for her patient help in testing the reliability of inclusion criteria and robert nash ilka gleibs and y gavriel ansara for their helpful feedback and methodological suggestions this study was conducted in partial fulfillment of the requirements for a doctoral degree by the first author under the supervision of the third and with the assistance of the second

introduction the concept of capital which has many dimensions is one of the most frequently discussed topics in both sociology and economics literature and is treated in association with many variables economic capital as the monetary equivalent of the investment physical capital as the equivalent of machinery equipment equipment infrastructures and immovables the provision for competition and productivity in social values human relations education knowledge competence business sports art and cultural environment human capital as human capital knowledge capital which describes the information produced used and stored for later use in society cultural capital which provides socioeconomic advantage to societies creates value in life and as the counterpart of cultural accumulation the physical spiritual and emotional of the society health capital which indicates health and wellbeing and social togetherness social capitalsc which describes the relationship and accumulation of trust created between individuals and with every segment of society are the different dimensions of the concept of capital after understanding the importance of logical emotional and spiritual bonds mutual relations which form the basis of society and created between people places and institutions on economic and social development the concept of sc has begun to be discussed in every aspect in scientific studies and practices in the fields of business administration management and sociology it has been a subject that has attracted the attention of researchers since the 1990s many researchers have discussed and defined the concept of sc with many different dimensions such as values in the adult world relationships representation belonging success productivity competition social values and norms one of the main problems with sc is the lack of consensus on its definition the major definitions of sc can be listed as follows • coleman defined sc as public property created by individuals in the society living and using together • putnam defined sc as the sum of the relations formed by social networks trust and social norm in processes that have not been interfered with • putnam et al kawachi et al and fukuyama defined sc as the sum of the values that a team community or society created andor spontaneously formed by others and that they experience in their relationships • dasgupta and serageldin defined sc as contrary to some authors social capital is not as a public good but as an individuals place in society and the individual value he sees in society • smith defined sc as an environment of social solidarity and trust • grootaertvan bastelaer defined sc as the sum of the contributions of the relations and values that individuals establishmaintain with other individuals and the institutions they interact with to social social and economic development and change • fukuyama defined sc as the unity of social norms that creates the harmony cooperation and coordination created by the individuals forming the society ensures its continuity and is based on sincerity when the common features of the definitions given above are brought together sc is a network created between individuals that affect and are affected by social norms reflects the value of the individual and society affects the ability to act together in the realization of the goals definedsupported by the group or society and the sum of norms and values that hold individuals together and includes institutions formed by individuals the three most basic elements of social capital are voluntariness trust and reciprocity it is analyzed in terms of the form of sc as horizontal and vertical horizontal networks include networks formed by members of equal or equivalent status such as family neighborhood friendship relations and hobby group membership and relations are mostly informal in nature vertical networks on the other hand represent a hierarchical structure where there is a status difference between members educational institutions and government offices are examples of this structure relationships of this nature are mostly of a formal nature the analysis of social capital in terms of severity means the classification of sc networks according to their influence it is the most accepted classification with granovetters definition of strong and weak networks strong networks it refers to relationships that contain emotional and continuity such as elementary family kinship close friend groups where trust norm and cooperation elements are at the forefront and where there is a fast reliable and comprehensive information flow weak network relationships also define the network of superficial sparse and distant relationships sc is classified by putnam as connecting and bridging sc in terms of its nature binding social capital encompasses the network of relations among its members such as family kinship and closed group memberships which tend to be permanent and where the concept of trust is important bridging sc on the other hand characterizes relations between groups rather than individuals and includes extraterritorial or distant relations to these two concepts of putnam woolcock added the concept of unifying sc the unifying sc is the networks that are established despite hierarchical differences such as status power and economic level differences workplaces government offices educational institutions religious organizations are included in the unifying social capital networks in terms of their nature in general the resources produced by the participation of individuals in social networks and the norms of trust and reciprocity that emerge from these interactions are defined as sc sc is a concept that has often studied by social scientists to examine the relationship between sc and health and to create intervention programs in this area first the concept of sc should be known by health professionals the concept of sc is handled in different ways in terms of its plane form intensity and quality like in bronfenbrenners theory of ecological systems each plane that affects the childs growth and development is a complementary structure that interacts with the structures within itself and other planes the individual and the society influence each other and form sc the child and adolescents ecological environment and its interaction structure and social networks are important factors that affect the child and adolescents biopsychosocial wellbeing the elements that makeup sc and bronfenbrenners theory of ecological systems are very similar sc which tries to explain the functional structure and impact of life in society can contribute to understanding and preventing crime and criminal behaviour among adolescents preventing abuse and neglect of children and promoting the optimum development of young people for this reason studies in sc and health are becoming increasingly important it is thought that it is essential that social pediatricianspediatricians work together with social sciences on this concept and contribute to the concept of sc which cannot be fully agreed upon in defining it from a health and child perspective with their knowledge measuring social capital many scales designed to measure sc have also been developed for adults in some studies sc has been studied by reducing it only to the factor of trust in the study of narayan and cassidy one of the most comprehensive measurement studies the characteristics of the group generalized norms associations assertiveness neighborhood connections volunteerism and trust were examined there are very few studies to measure the sc of children and adolescents looking at the sc literature there are only one sc scale developed by huang and adapted to turkish by ardahan and ezici for primary school students and sc scale for adults developed by onxy and bullen and adopted to turkish by ardahan but there is no sc scale for adolescent one of the most comprehensive studies to measure the sc of adolescents is paiva et al this scale includes social cohesion sense of belonging trust autonomy and control and it is seen that it is insufficient to explain each element of sc little is known about the links between sc and health among adolescents even when adolescents were the subject of research studies often used questionnaires designed for adults considering the current literature sc scale for adolescent prepared with a perspective that covers the specific period of adolescents and sees them as active social factors is needed according to streiner et al developing a valid reliable assessment tool is not a trivial task and it is recommended to use previously designed and tested tools in studies in this study it was aimed to develop the social capital scale for adolescents with an interdisciplinary working principle by a social science researcher a social pediatrician and a pediatrician experienced in sc and to make its validity and reliability for the turkish population methods working design this is a methodological study it was conducted between 17 nov 2020 and 19 feb 2021 the study was conducted following the principles of the declaration of helsinki individuals between the ages of 13 and 19 to whom the online questionnaire can be delivered across turkey were included in the study ethical approval was obtained from the clinical research ethics committee of akdeniz university faculty of medicine calculating the number of samples the total number of adolescents aged 1319 in turkey which constitutes the universe of the study is around 7 million and the number of samples calculated with a 95 confidence interval ±2 error margin was 2393 since it was decided to use the halving method to perform explanatory and confirmatory factor analysis in the scale development study it was aimed to reach 4786 people who were twice the number of samples data collecting a nonprobability sampling method was used in this study and adolescents aged between 1319 years across turkey were invited to the survey via social media telephone message groups or email through an electronic questionnaire sent to all schools affiliated to the ministry of national education before starting the survey participants were briefed on a questionnaire form about the purpose methodology expected benefits foreseeable risks and the right to withdraw from the study at any time if they are volunteer to continue they start to answer the rest of questionnaire form survey content the questionnaire consisted of demographic data and an item pool prepared for the development of the scsa a twostage process was followed while creating the item pool in the first stage under the leadership of ardahan an experienced academician in sc scale studies a threeperson working group consisting of a social pediatrician and a pediatrician created an item pool consisting of 105 items in 17 groups in total the theoretical dimensions of sc have been carefully studied from various sources for the creation of the item pool can be listed as follows • social capital scale developed by onxy and bullen and adapted to turkish by ardahan • primary school students social capital scale developed by huang in the second stage facetoface and online interviews were conducted with 15 male and 15 female adolescents with different demographic characteristics about the clarity of the items and whether there were any missing or misunderstood items while the survey items were being prepared the likert scale was used to score each item in line with the specific suggestions of approximately 80 some items were changed in writing some were removed new ones were added and the final version of the questionnaire was created statistical analysis an electronic survey was conducted between 1711202019022021 and 5946 responses that could be used for analysis were reached the data were divided into two according to the order of arrival explanatory factor analysis was applied to the first half and confirmatory factor analysis was applied to the other half spss 230 package program was used for statistical analysis the itemtotal correlation was applied to the factors obtained due to factor analysis cronbachs alpha coefficients of the subdimensions formed as a result of efa were used and pearsons correlation coefficients were used to examine the relationship between the scale factors obtained the results were questioned at the 001 and 005 significance levels varimax rotation method was used in the study results a total of 5946 adolescents participated in the study and 706 of the participants were girls and the mean age was 1524±127 efa was applied to the list of 105 items created for the scale thirty items with a total variance value of less than 05 and factoring out the required factor were removed efa was reapplied to the remaining 75 items in the final analysis the kmo value is 0927 bartletts test of sphericity p 005 chisquare118597259 and sd2775 p 001 was calculated the cronbachs alpha coefficient of the scsa scale was 0936 and the variance explained by the scale was 663 3 confirmatory factor analysis was applied to the data set and statistically good fit results were obtained in all fit indices the results are summarized in table 4 degree of freedom was calculated as 363 according to sümer and schreiber et al it shows a standard fit absolute fit indices score çokluk et al according to marsh et al good agreement in gfi and agfi it showed excellent understanding in rmsea rmr and srmr incremental fit indices according to sümer it has perfect fit scores in cfi nfi nnfi ifi and good fit scores in pgfi with these findings it is possible to say that the model is acceptable calculation of scsa total score the newtonraphson method was used to calculate the total score of the scsa as erkuş mentioned in his study since the total social capital score will give a value that can be used in many comparisons an idea of that sample will provide the opportunity to compare tscs with scores obtained from different samples at different times the following steps were followed in the calculation of tscs a first process step each factors mean value must be found 𝐹𝑀𝑉 𝑡 is used to see this t is the total number of items in that factor mi is the value of the answer given to item i this process should be done for 17 factors and data entry for each person in the scsa b second process step the fmv value found for each factor is multiplied by the contribution over 100 of the explained variance in table 1 tscs is found by summing the new values obtained for each factor in further studies to be conducted using this scale it is recommended that its validity and reliability be repeated avi and xi values should be calculated according to the new afa and included avi values should be taken from the of the rotated variance row as shown in table 2 if efa is not desired values from the original scale can be used c third process step in determining the contribution of each factor to the tscs the contribution value over 100 to the explained variance of the∑ 𝑓 𝑖1 62623 scales will be accepted as a coefficient f is the number of factors in the scale eg it will be found as 66328 10319925 for f01 66328 6207032 for f08 d fourth process step the favi values of each factor are multiplied by the constant xi of that factor tscs is obtained by summing the values for each factor at the end of the multiplication the f in the formula is the number of factors on the scale the tscs value will be between 100400 for each individual discussion one of the main goals is to enable children youth and adults to maximize their abilities and gain control over their lives it is essential and necessary for schools families and communities to work in partnership to reduce inequalities in children adolescents and young peoples health wellbeing and resilience the critical report fair society healthy lives presented six evidencebased policy recommendations to reduce health inequalities in the uk three of these goals and recommendations talk about the importance of the sc of the child and society to ensure the whole biopsychosocial wellbeing of children and offer suggestions for improving them early intervention and preventive studies are the most effective approaches in health interdisciplinary and multidisciplinary work of health and social sciences on sc is critical for improving social and community capital and reducing individual social isolation the royal college of paediatrics and child health emphasized the importance of doctors knowing sc contributing to the concept of sc of children with pediatricians knowledge and taking an active role to achieve better health outcomes for children studies in sc have generally been conducted with adults when examining the structure of adolescents social networks it should be considered that they differ from adults due to the ongoing growth and development process each step of the childs ecological environment the mutual interaction in these steps the childs perception of these interactions and the behaviours he shows against them should be included in the concept of sc while this scale was being developed the scales previously made with adults and a small number of children were carefully examined but this was not enough these concepts which are essential for sc were also included the researchers carefully examined the theories related to sc in the study group the social structure of adolescents was tried to be explained comprehensively taking into account the biopsychosocial characteristics of adolescents the presence of a social scientist experienced in sc a social pediatrician and a pediatrician in the study group may have contributed to the synthesis of the perspectives of social and health sciences studies conducted by reducing a broad concept such as sc to only one aspect may be insufficient in examining the relationship between sc and childrens health and even lead to wrong conclusions sc assessment tools specifically designed for adolescents can contribute significantly to the research and understanding of health and wellbeingrelated behaviours one of the innovations in this study is that the researchers in the study group added the concept of digital neighbourhood to the scale which has not been studied in sc scales until now while the item pool was being created it was estimated that digital neighborhood contributes significantly to the interaction between sc platforms and horizontal and vertical sc networks especially among adolescents and is also an sc element that bridges after the explanatory factor analysis of the study it was seen that 4 of the eight items related to the digital neighborhood came together and factored significantly and differentiated from other items sc is seen as a resource that individuals can use rather than own adolescents must have social networks and the ability to use them therefore in this study the item pool of the scale was created by considering how adolescents perceive their social networks how they feel about the relationships they have their ability to produce solutions take the initiative how they behave against pressures and the interchange of the connections as predicted as a result of the explanatory factor analysis seven under the title of consideringcaring three under the title of being cared feeling valued two under the title of taking initiative three under the title of distant relationship pressure three under the title of close relationship pressure seven under the title of tolerance to difference and six items were factored under the title of sensitivity to social problems narayan and cassidy in their study thought that measuring scbased only on the elements that make up it was an incomplete effort and added the questions they developed based on the results of sc to the survey questions putnam who has essential studies on the concept of sc states that depending on the quality of sc it can have adverse effects and positive results on individuals it is emphasized that sc which is fully affirmed at first as it facilitates individuals to act in cooperation and effectively should be evaluated according to the nature of networks taking into account the negative externalities that may later produce all these crucial points were considered while creating the item pool in this study because in the literature it has been seen that the mistake of treating each of the different dimensions of the concept as if it were sc itself mcpherson et al 2001ehsan et al 2019 although each of these dimensions adds value to the idea none of them is sufficient to explain the concept by itself fully the 75item wide sc scale of 17 factors developed for adolescents in this study may enable comprehensive evaluations in future studies strengths and weaknesses of the study one of the most substantial aspects of this study is that social and health scientists have created the sc scale by working with the interdisciplinary working principle another strength of the study is its large sample size including children aged 1319 in turkey living in rural and urban areas the weak aspect of the study is that gender equality could not be achieved due to more returns by the female gender the questionnaires were sent to the adolescents randomly regardless of gender on the online platform but the responses were mostly of the female gender this situation has consulted the statistician and the statistician did not recommend that the data be selected or modified to achieve gender equality conclusion while the concept of sc which tries to explain the functional structure and effect of life in society is handled the adolescent age group should be specifically addressed using the scales used for adults in studies with children may affect the reliability of the results to examine the relationship between sc and health and create intervention programs in this area health professionals should first know the concept of sc the fact that health and social scientists work in a multidisciplinary and interdisciplinary manner and address such a broad subject can increase the efficiency and effectiveness of the studies to be carried out as a result of the analysis it can be said that the social capital scale for adolescents developed is valid reliable and sufficient for the turkish population this scale which was created by considering all the elements of the concept of sc is thought that can be used in studies in the fields of social and health sciences aimed at determining the protective and risk factors for children and understanding the effects of childrens ecological environment in studies to explain the relationship between sc and health in studies in the field of child abuse and neglect we visit our neighbors as a family pn 5 our neighbors are respectful to other individuals living in the same place f05 trust in public institutions tpi 1 works are done as they should be in government institutions tpi 2 when people have a problem they can easily apply to a government institution to solve their problems and seek their rights tpi 3 the institutions in the society i live in are not discriminatory tpi 4 there are institutions where people will seek their rights when faced with an injustice tpi 5 you do not need an acquaintance to run things in this country i am a member of any club association or society such as sports crafts social clubs and associations rcs 2 i am a community member at my school such as an arm activity or sports club rcs 3 i am a member of the management and organizing committee of any club association or community f06 f16 taking initiative ti 1 even if i am not asked or told i take the necessary initiative to solve social problems ti 2 when i have a disagreement with anyone about stray animals using common areas or occupying the general plan etc i am willing to take a conciliatory stance ti 3 when i need something to make an important decision or complete a task i get what i need myself even if no one is supportive f17 safe environment se 1 i feel safe walking around our neighborhood after dark se 2 the neighborhood where i live is known as a safe place conflict of interest statement the author declares no conflicts of interest about the author

aim in recent years the relationship between social capital sc and issues that concern people and society especially health has been a matter of curiosity most of the studies on social capital in the literature are for adults and there is no widescale for adolescents this study aimed to develop the social capital scale for adolescent the child and adolescents ecological environment and its interaction structure and social networks are important factors that affect the child and adolescents biopsychosocial wellbeing sc gives ecological environments level the concept of sc is handled in different ways in terms of its plane micro mezzo and macro form horizontal and vertical intensity strong and weak and quality binding unifying and bridging methods this study is a methodological type of research participants were adolescents aged 1319 who could be reached online volunteered to participate in the study a nonprobability sampling method was used results a total of 5946 adolescents participated in the study explanatory factor analysis efa and confirmatory factor analysis cfa were applied to the dataset as a result of efa the social capital scale for adolescents scsa consisting of 75 items and 17 factors was obtained the cronbachs alpha coefficient of the scale was 0936 and the variance explained by the ranking was 663 cfa satisfactory fit results were obtained in all fit indices conclusion the scsa is valid reliable and sufficient for the turkish population this scale which was created by considering all the elements of the concept of social capital is thought that can be used in studies in the fields of social and health sciences

introduction the impact of longterm care needs of older and disabled persons on health care costs have previously only garnered minimal attention or oversight in the nations budget as baby boomers begin to enter retirement the solvency of medicare and the social security garners the majority of the attention in the media and among policy makers elder care is more offbudget and garners less attention however offbudget costs are still real and come in the form of opportunity costthe responsibility of caring for dependent elderly family members remains in the hands of family caregivers the cost of caring for aging relatives may disproportionately impact lowto middleincome families the most which makes hispanics particularly vulnerable according to the us the fact that elder care is hidden offbudget masks another looming crisis one concerned with growing indirect costs borne by families rather than by the government or the network of longterm support service providers these indirect costs on families may have longterm devastating effects for families caring for their elderly parents at home significant time is spent providing that level of care the opportunity costs come in the form of compensation foregone due to reduced participation in the workforce diminished savings and careers not pursued indirect costs ultimately affect budgets at the state and federal level as reduced incomes lower sales and income tax revenues the cumulative effect of these financial sacrifices can become even more formidable both for individuals and for society for instance excessive elder care burdens could limit the familys ability to pay for college educations the risk of institutionalization has not previously applied opportunity cost analysis to an economic perspective for older mexican americans or other hispanic groups time considerations have a long history in economics this perspective dates back to gary beckers theory of time allocation and opportunity costs most recently the concept of time poverty has been applied to obesity and diet the economic perspective for our analysis is viewed from the family rather than state or federal governments for instance opportunity costs increase as the time needed to provide elder care increases furthermore the opportunity costs of caring for an elderly parent at home are higher for those with higher wages simply because the monetary value of their work hours is higher this study adds to the literature by examining the influence of time inputs of adult children associated with the risk for longterm care in their aging mexicanamerican parents opportunity costs at the individual level typically the time of the activity caregiving in this case at individuals wage but in this sample there is little variation in wages our purpose then is to assess the way in which time commitment requirements affect the use of nursing homes we analyze longitudinal data from a unique sample of mexicanorigin individuals 65 and over residing in the united states to determine how time commitments which are a proxy for opportunity cost in terms of career salaries and wages foregone positively affect the likelihood of using nursing homes for elder care for both men and women we segment our model by gender for several reasons compared to men women have a higher probability of nursing home admission and lifetime use of care also women comprise the vast majority of nursing home residents primarily because they have higher life expectancy than men after age 65 in addition women are more often on the receiving end of caretaking 57 of care recipients are women and the remaining 43 are men because they live longer than men by at least five years the risk of disability increases with aging and the subsequent need for assistance for this reason the risk of nursing home care may differ by gender background and prior research mexican americans have traditionally low levels of utilization of institutional care one factor is the direct cost keeping elders at home and in the community is cheaper even for families whom are dual eligible for medicaid and medicare another factor the cultural tradition of caring for aging relatives has long been a powerful predictor of longterm care use a value moderated by familism mexican americans exhibit a strong cultural preference to care for elderly family members within the home however over the last 10 years rates of entry into nursing homes for hispanics has risen by 549 possibly suggesting that an increase in time inputs by family members are increasing their opportunity costs as immigrants stand to lose more wages and as care burdens are concentrated on fewer siblings the degree of eldercare responsibilities is likely to increase as the elderly mexican american population grows old with disabling physical and cognitive problems among those with the financial means to care for family members at home time constraints caregiver stress and fewer family members available to care for aging parents may explain this increase in nursing home use to date no study has attempted to estimate the effect of opportunity costs of caring for frail or older mexicanamerican relatives particularly among adult children on institutionalization understanding this is crucially important as the older hispanic population is projected to increase dramatically over the next four decades by 2050 hispanics 65 and older are expected to reach 175 million up from 29 million in 2010 those 85 and over the group at highest risk of dependency are also projected to quickly climb increasing ninefold from 305000 in 2010 to 29 million in 2050 opportunity costs framework to illustrate the concept of opportunity costs we present equation 1 which shows hypothesized drivers of adult childrens opportunity costs that must be negotiated when caring for elderly parents equation 1 adult childs opportunity costs wage x of living adult children spouse the adult childs opportunity costs are valued in monetary terms valued at the wage in the numerator the primary driving force is older mexican americanss care time determined by their functional independence and health care time is considered one of the strongest documented predictors of longterm care needs where higher functional incapacity is directly correlated with greater care time inputs time inputs may involve assisting the older relative with cooking cleaning administration of medications and other chores in our model they are largely determined by difficulties in performing instrumental and daily activities of living as well as selfreported health although wages are not directly measured in this study opportunity costs experienced by adult children are proportional to time spent for elder care as noted earlier opportunity costs represent the loss of foregone activities considered to have value to adult children that is when adult children are spending time caring for elderly parents they are using that time for alternative purposes such as direct and indirect loss of earnings from relinquishing second parttime jobs overtime advancement training as well as intangible pursuits such as personal enrichment or engagement in leisure activities there are other intergenerational effects such as reduced savings for college expenses specific hypothesesthe adult childs opportunity costs will increase as the care time needed by the elderly parent increases those opportunity costs are expected to vary by the availability and proximity of adult children presence of a spouse and other variables depicted in the denominator of equation 1 first we hypothesize that adult childrens care time and opportunity costs may hypothetically be curtailed by the presence of other living siblings and spouse to elderly parent for several reasons the presence of other active siblings andor spouse would presumably lead to a distribution in the care chores this also increases the probability that at least one adult child will step in and avail themselves as primary caregivers less time is thus afforded by any one sibling thereby diminishing the opportunity costs borne by any one caregiver secondly we hypothesize that opportunity costs are influenced by the transit time for that adult child to reach the elderly parent as noted earlier traveling further distances to provide care to aging parents adds to adult childrens opportunity costs and may also introduce complexity to their caregiving role if scheduling becomes difficult alternatively close proximity including coresidence with the elderly parent may lead to increased time spent providing care around the clock or be interpreted by other siblings as a cue to lessen their own involvement in caregiving and in turn only exacerbate the opportunity costs of the coresiding child familial network availability and cultural factorsthe majority of home care of older mexican americans is currently borne by family members a proportion higher than any other racialethnic group family caregivers spend significant amounts of time caring for elderly parents at home particularly when they are afflicted with dementia or diabetes conditions that disproportionately affect older latinos for example diabetes is estimated to affect approximately onethird of mexican americans age 75 and above likewise by the year 2050 the number of latinos diagnosed with alzheimers disease and related dementias could increase more than 6 times from the current figure of less than 200000 patients to as many as 13 million mexican americans have a higher fertility rate than other ethnic groups this may change in the future as the us birth rate for mexican immigrants fell by 23 between 2007 and 2010 in response to the economic recession however historic fertility rates have led to a greater number of family members available to share in helping hispanic aging parents for instance the total time input for helping aging parents may be the same but may be shared among more siblings geographic dispersion of families also increases the time required to help aging parents because of increased travel time to reach them when they need help mexicanamerican women especially daughters are the primary caregivers for elderly parents according to a 2008 study approximately 74 of hispanic caregivers are female of these 41 felt that they did not have a choice within hispanic culture the care of aging parents has been traditionally considered the responsibility of children and this burden is strongly associated with female children however the pool of available female caregivers has been shrinking the trend of women entering the workforce has shrunk the network of female family caregivers available for aging relatives which increases the average load on siblings left to care for parents because professional women are less available there is little evidence to document the extent to which available family support affects older adults need for and access to both informal and formal caregiving systems financial resourcesone potentially important predictor of access to longterm care is medicaid in 2012 the average cost of nursing home care was 88000 per year about 241 of older adults average annual income this expense puts longterm nursing home stays outside the reach of the vast majority of americans without ample savings and generous private longterm care insurance for the eligible poor medicaid coverage is often viewed as a necessary but not sufficient condition to seek longterm care among disabled older adults medicaid is the largest financial source for institutional and some communitybased longterm care services approximately twothirds of older adult nursing home residents rely on medicaid to pay for their care about 266 of hispanics live in poverty for older hispanic women who live alone that number increases to 388 mexican americans have less formal education and are less likely to work in highsalary jobs thus they are more impoverished have few assets and are likely to have no private longterm care insurance in retirement however mexican americans are more likely than nonhispanic whites to participate in the medicaid program in later life therefore even though affordability remains an issue the low prevalence rate of nursing home use may not entirely be due to affordability despite the flourishing population of older mexican americans and alarming rates of disability there remains scant research on the role of the kinship network structure in diffusing adult childrens time burden in caring for aging women to that end we examine gender differences in adult childrens opportunity costs on older mexican americans use of longterm nursing homes or assisted living facilities we then estimate the likelihood of longterm care use as the opportunity costs of caring for elderly parents increase study sample we employ data from the hispanic established populations for epidemiologic study of the elderly the hepese is a large multistage probability sample of older mexican americans who reside in five southwestern states texas california new mexico arizona and colorado the dataset includes information on mental and physical health psychosocial characteristics and health and longterm care use information from a knowledgeable proxy such as a family member or caretaker was obtained for individuals who were unable to complete the entire interview themselves because of infirmity or cognitive incapacity baseline data were completed in 199394 with followup interviews in 199596 199899 200001 and 200405 our analysis draws on mexicanamerican men and women over the age of 70 interviewed in 200001 and at the follow up in 200405 subsample analysis of men and women from wave 4 and 5 were also analyzed to assess genderspecific differences the response rates for the two waves were 81 and 74 respectively the share of proxy interviews in 2004 was 69 and at the followup 83 respondents were offered the choice of conducting the interview in spanish or english only complete responses on longterm care use were included in the final analyses the selection for the final subsample for analysis is summarized in the flowchart in figure 1 methods the variables for the analysis are nursing home and assisted living facility use time inputs consisted of 1 older adults care needs 2 family support and 3 proximity defined by the transit time between children and elderly parent analyses were adjusted for demographic characteristics nursing home and assisted living facility use longterm care refers to institutional types of living arrangements in wave 5 the hepese interview inquired if respondents had entered a nursing home skilled nursing facility or assisted living facility after 2002 after the completion of wave 4 an affirmative response is coded 1 if it occurred after wave 4 and 0 otherwise shortterm use of nursing homes such as post hospitalization or rehabilitative care was excluded from this definition following their first entry into a nursing home participants were excluded in subsequent waves in the analyses the final analytic sample reflects the total number of older adults who responded to a question on nursing homes in wave 5 and who were previously noninstitutionalized we then utilized subsamples of only women and only men to examine genderspecific nuances in the care of aging mexicanamericans care time care time was measured by older adults need for assistance as determined by 1 qualityadjusted lifeyears 2 activities of daily living and 3 instrumental activities of daily living each of these indicators of care time was modeled separately in the regression analyses qaly score weights are used as a proxy measure of quality of life and a correlate of time inputs required from kin in the care of aging or disabled parents qaly scores from wave 4 were used for this purpose as this is the period when decisions about institutionalization in wave 5 are being considered qaly weights were weighted by participants response to a oneitem selfrated health question and 6 levels of functional impairment in daily and instrumental activities the oneitem selfrated health scale is a valid subjective measure of mortality and predictor of mortality among latinos when adjusting for acculturation but varies by income most health surveys use a measure of selfrated health predominantly assessed by a single subjective question selfrated health has been found to be a strong predictor of mortality not only in the elderly but also in different age groups and cultures it is also an effective indicator of present health status because it may reflect the various dimensions of health including individuals emotional social and cultural attributions of and reactions to physical health limitations which are unlikely to be adequately addressed in a single study as such the use of a oneitem selfrated health scale is an effective measure of the health of participants the katz index of activities of daily living was used to measure health and functioning the scale ranges from 0 to 7 and indicates whether the respondent required help in bathing dressing eating grooming toileting transferring and walking across a room another measure was used with a similar scale from 0 to 7 to indicate whether help was required with the following instrumental activities of daily living light housework preparation of meals taking medications grocery and clothes shopping using the telephone and managing money the 6 levels of functional ability were 1 limited in adl 2 limited in iadl 3 unablemajor 4 limitedmajor 5 limitedother and 6 not limited we used family support variables from wave 4 to predict nursing home use in wave 5 this accounts for time lag between the period when families are juggling caregiving challenges and contemplating adjustments in longterm care to actual entry into a facility in wave 5 kin availability we expected that a higher number of living adult children cohabitation with a spouse andor adult child and closer proximity to the nearest adult child would represent higher capacity to provide support by family family support was ascertained by the older adults 1 number of living children and 2 whether they lived with an adult child proximity to nearest adult child was measured in hours travel time time demands on adult children are likely buffered by the presence or absence of the elderly parents spouse is alive thus living with a spouse was also included demographic characteristics the analyses took into account other factors that likely affect longterm care use including stratification by gender and the respondents age as a continuous variable in years health insurance coverage was dichotomized as 1 if participants reported having medicaid only or dual coverage by medicare and medicaid and 0 for all other forms or lack of insurance this designation concurs with aforementioned findings which maintain that access to these public sources of longterm care financing is a significant predictor of longterm care use analyses qaly weights were computed according to participants selfrated health and level of independence according to the adl and iadl scales the hepese had analogous questions to the national health interview survey form which the qaly weights were drawn three logistic regression models were tested to estimate the likelihood of older mexican americans entering a nursing home or assisted living facility as predicted by kin opportunity costs family support and demographic characteristics each model included only qaly weights adls or iadls while the outcome measure was drawn from wave 5 predictor variables in the model from the previous wave were included for analyses all analyses were performed using sas® 92 these steps and analyses were repeated in subsamples of only women and only men qaly weights to be estimated are shown in the appendix scores ranged from 1 to 1 with lower scores indicating higher functional impairment and worse selfrated health thus low qaly weights reflect greater time spent on the care of elderly parents and higher risk of nursing home use for example participants reporting poor health and limited in adl scored 01 in addition we chose to dichotomize adl and iadl indices as none versus one or more dependency due to their asymmetry and model these separately to examine their individual influence on nursing home care results approximately 5 of the total sample of men and women were newly institutionalized in a nursing home at wave 5 as shown in table 1 mexican american women and men had a mean age of 783 and 779 years respectively and an average of five living children men were more likely than women to be living with their spouse only while a larger fraction of women than men reported living with at least one adult child the average travel time for the nearest living child to visit an elderly parent was shorter for women than for men the mean qaly weights in our sample were higher for men than for women conversely female respondents reported more iadl disability then men and also required greater assistance with at least one adl women also have a higher participation than men in the medicaid program but the differences were not statistically significantly different from one another beta coefficients are shown for the final three logistic regression models in the pooled sample nursing home facility use was modeled by adult childs opportunity costs calculated from estimated care needs kin availability and controls for age and medicaid coverage because the qaly weight is highly correlated with adl and iadl variables we present separate models for each of these variables independently with controls for kin support health insurance and age subsequent models presented in table 3 are the same regression analyses stratified by gender in table 2 model 1 estimates the effect of opportunity costs and kin availability on longterm care use controlling for qaly weights model 2 considers adls alone and model 3 examines iadls in all three models our three measures of opportunity costs significantly predicted entry into a nursing home or assisted living facility in model 1 lower qaly weights increased the risk for entry into a nursing home or assisted living facility in models 2 and 3 adls and iadls significantly increased risk for institutionalization respectively table 3 presents the logistic regression model stratified by gender the model excludes controls for gender used in the pooled model in table 2 the results are largely the same for women with one important exception mexicanamerican women with a higher number of living adult children were at a lower risk of entering a nursing home or assisted living facility this finding is consistent with our theory that larger kinship networks would reduce longterm care use b 17 p 05 model 2 b 15 p 05 and model 3 b 17 p 05 the results in table 2 for men differ from women on care time and kin availability measures among the sample of older mexicanamerican men adl disability was the only statistically significant determinant among the multiple predictors of nursing home use like their female counterparts men who reported receiving help with personal care had an increased likelihood of nursing home use as shown in model 2 this finding was expected as the need for adl assistance is one of the most common reasons for admission to a nursing home in addition to conducting separate models for each gender we ran one model using interaction terms with gender and each variable we found that while interaction terms produced slightly different estimates none were significantly different from zero the predicted effects of other variables in the model while in the expected direction are more ambiguous and may be due to insufficient statistical power discussion the opportunity costs of providing care to aging parents can become daunting on adult children and reach a tipping point that lead mexicanamerican families to seek institutional longterm care elderly parents care needs which are highly correlated with the time inputs required are the strongest correlate of longterm care use and consequently adult childrens opportunity costs we hypothesized that adult childrens time inputs in furnishing assistance would increase in proportion to the functional health needs of the elderly parent but alleviated by dispersion of care responsibilities among siblings the parents spouse and their proximity to the elderly parent moreover the size of the kinship network and proximity to the elderly parent would purportedly increase the probability that at least one of them would step into the caregiving role thereby preventing longterm stays in nursing homes or assisted living facilities even as care requirements increased for mexicanamerican men at least it appears that marriage matters more than the convoy of support provided by grown children on the other hand for mexicanamerican women where widowhood is common having more children to rely on is significant in reducing the risk of longterm care as predicted we found that estimated care time was largely driven by older adults qaly weights and physical health limitations which increased the adult childs opportunity costs and consequently raised the elderly parents risk of entering a nursing home or assisted living facility travel times to care for elderly parents were low in this sample which reflects the common albeit declining practice that mexicanamerican families reside in close proximity or large households in contrast to our hypothesis the adult childs opportunity costs were not tempered by the availability of kin the presence of the older adults spouse or close proximity to the elderly parent in predicting longterm care use for men these findings suggest that even when adult children andor spouses are present and relatively close in proximity the older adults physical limitations may require much more time and attention than the immediate family can provide the inconsequential role of kinship size and proximity to elderly parents longterm care use did not persist in our regression models with the subsample of females in fact we observed that women with a higher number of living adult children were at a lower risk of entering a nursing home or an assisted living facility compared to women with fewer children in the best of scenarios larger families may engage secondary caregivers in dividing the workload to reduce time inputs per adult child it is important however to avoid assumptions that a large family network evenly shares the caregiving responsibilities an elderly parent may have ten offspring but only one or two may be able or willing to provide care many factors have the potential to influence which family member will care for the elderly parent the primary caregiver may selfselect or be coerced into the role for a variety of reasons they may have or be perceived to have the greatest availability more resources lower job commitment better relationship with the parent or be geographically most convenient gender is also a significant factor female children are more likely to be caregivers than males especially in the mexicanamerican culture and assume the role without being given the choice or a say in the matter thus having more children or a larger care network in sheer size does not necessarily translate into more readily available or quality care provision larger kinship networks therefore do not imply an equitable distribution of caregiving responsibilities rather they may simply increase the probability that one of the offspring will step up to provide care the benefit of having many children on reducing womens risk of longterm care may be shortlived for future generations in light of the sharp decline in fertility rates among mexicanamerican women over the past decades in 1960 mexicanamerican women in the us averaged 36 children per woman by 2009 they averaged 20 children similar trends were observed in mexico where the fertility rate decreased from 73 to 36 children per woman as the family network shrinks the safety net for elderly parents will likely decrease as the potential pool of caregivers becomes scarce one important aspect of caring for the elderly is that coresidence has the potential to significantly reduce the amount of power that the child caring for the parent has in comparison to his or her siblings because of this coresidency may not emerge as the best solution resulting in elderly parents ending up in nursing homes rather than being cared for by children this potentially explains the increase in rate that elderly parents are being admitted to nursing homes and assisted living facilities in our sample women were far more likely than men to live with an adult child and as they become increasingly impaired the demands adult children face will invariably become more serious such psychological and emotional potential dependency burden inherent in coresidence may create undue hardship on grown children caring for elderly parents as they enter into deep old age possible limitations of the study include differences in the proportion of men and women in the sample and overall small number to enter a nursing home additionally this study excludes the use of homeand communitybased support services which aid older adults with staying at home it is also important to note that selection bias may explain why most opportunity cost variables were insignificant in our model for men the premature death of unhealthy men at the followup interview may result in an overrepresentation of healthier men among our older males cohort this may result in an overrepresentation of healthier better functioning men who require less assistance from adult children and also less likely to enter a nursing home men are also likely to reside with a spouse compared to older women it may it is possible that the number of children has less bearing on men because of gender variation in longevity females outlive males in most countries thus in their final years wives are able to serve as the primary caregiver for their husband while children provide a supporting role if any women are more likely to outlive their spouse to be widowed or to live alone and so there is a decreased likelihood that they will have a partner to care for them instead elderly females may rely on support networks from adult children and friends more than elderly males the relative importance of adult children to mothers but not fathers on the risk of entering nursing homes has been corroborated in other research another restrictive component to this analysis was the estimation of wages rather than through direct measurement like most aging studies few capture this data unless exclusively focused on caregivers future studies involving cohorts of older adults should also include information on adult childrens opportunity costs in the form of wages lost employment and financial strains and other pursuits foregone this is the major scalar omitted in equation 1 the absence of survey information on opportunity costs may have led to an underestimate of the true opportunity costs felt by adult children because there is no variation in how the value of time varies by adult child this sample included mostly low to middleincome families thus wage and salary information may be relatively low given high poverty rates in the hispanic community family members caring for aging mexican americans may be particularly vulnerable to external factors that influence their ability to earn a living and save in future generations the wages of adult children of hispanics may rise and the increased variation in wages may make this an important determinant of nursing home use in addition opportunity costs borne by adult children must account for cultural perceptions about their personal obligation to furnish care to frail or disabled aging parents or knowledge and attitudes about the range of longterm support services including homeand communitybased care the long running largest epidemiological study of older mexican americans employed for this research does not currently contain data on the adult caregivers of participants but will be available for the first time in the next few years as the population of older mexican americans increases and disability rates among this population climb families may have to compromise on longheld traditional practices of providing all aspects of care to infirm relatives at home this may be especially salient for older women with fewer children to assume the caregiving role the majority of older mexican americans will enter old age with few or no assets or quickly spend their savings to eventually qualify and rely exclusively on medicaid as their longterm care insurer while this paper focused on nursing homes and assisted living facilities it is likely that older mexican americans will opt for noninstitutional longterm care among the wide range of homeand communitybased services provided by the aging services network not sure what was trying to be said here these are funded through section 1915 medicaid state waivers costsharing and the older americans act while medicaid reimbursement for nursing homes remained unchanged between 1999 and 2008 expenditures for homeand communitybased services for elderly and disabled grew by an astounding 163 as financial pressures escalate the us government will continue to support states in rebalancing their longterm care system shifting funds away from costly nursing homes to more affordable communitybased care that enables older adults to age in place and retain more autonomy over their care the deficit reduction act of 2005 and affordable care act of 2010 are just a few legislative examples of initiatives intended to support this migration of funding this emphasis on homeand communitybased care may be good news for mexicanamerican families grappling with the decision to abandon homebased care however health and longterm care policies must ensure that these options sufficiently offset the extensive time burdens of care facing the often lone adult child acknowledge the withering of a shared care system once common among mexicanamerican families and require providers to design culturally and linguistically compatible support services to increase their appeal use and effectiveness logistic regressions of kin opportunity costs effect on longterm care use among older mexicanamerican men appendix a qualityadjusted life years weights activity scale definitions by selfrated health and activity limitation

longterm care use among older mexicanamericans is poorly understood despite the adverse effects on health and economic disadvantage in this vulnerable population this study examines genderbased risk of longterm care use in 628 women and 391 men age 70 and over in the 200001 and 200405 waves of the hispanic established populations for epidemiologic studies of the elderly logistic regression models are employed to assess the impact of the opportunity cost implications of family support kin availability and coresidence relative to health care needs qualityadjusted life years qaly weighted scores and functional limitations on womens risk of entry into a nursing home a small percentage ∼5 of men and women had entered a longterm care facility women had lower weights for qaly weights and greater disability than men but on average were more likely to live with or in closer proximity to an adult child higher disability rates p 01 increased the risk of institutionalization regardless of gender because disability increases time burdens families with fewer adult children faced higher time burdens per child in caring for elderly parents particularly for elderly mothers demographic trends suggest that the number of adult children available to share the caregiving load may decrease longterm care use

attempted suicide and 27 made a suicide attempt requiring medical attention substantial research documents factors associated with suicide including mental illness social isolation access to lethal means and a history of violence in the current study we focused on factors fostering resilience specifically the role of social connectedness in suicide prevention suicidal behavior is thought to result from a combination of genetic developmental environmental physiological psychological social and cultural factors connectedness may be thought of as a thread weaving together these many influences in fact a primary aim of the first national strategy for suicide prevention was to promote opportunities and settings in which to enhance connectedness among persons families and communities in keeping with the national strategy and the research evidence in 2009 the centers for disease control and prevention adopted connectedness as its theme for suicide prevention the cdc defines connectedness across multiple levels of the social ecology as the degree to which a person or group is socially close interrelated or shares resources with other persons or groups this definition links a range of theoretically and empirically supported concepts such as social support social cohesion and social integration in a review of connectedness barber schluterman stated that connectedness frequently represented one or more of the following a measure of quality of a relationship the degree of liking an environment or relationship the quality of performance in an environment or relationship the possession of feelings or attitude states and a combination of states and the behaviors that precede them despite variation in measurement of social connectedness and populations studied the research demonstrating a protective effect on a range of suicidal behaviors remains largely robust for example using data from a crosssectional highrisk sample of adolescents in the northeastern united states kaminski et al found that family connectedness was a consistent protective factor associated with suicide ideation plans and attempts a large midwest study of high school students found protective effects of both family and other adult caring on suicidal behavior in a casecontrol study of older adolescents and young adults engagement in social activities and having people to confide in was protective of medically serious suicide attempts connectedness has also been found protective longitudinally particularly as related to family connectedness some contrast to this has been found related to the association between school or teacher connectedness and suicide ideation and attempts for example in a nationally representative sample of youth in grades 7 through 12 researchers found that school belonging did not have a protective effect on transitions from suicide ideation at wave 1 to suicide attempts at wave 2 however teacher support was protective in the transition from no ideation at wave 1 to attempt at wave 2 borowsky et al found that school connectedness and other adult caring protected some youth but this protection varied based on raceethnicity and gender to build the evidence base further in the current study we assessed three distinct domains of connectednessfamily school and other adult connectednesson suicide ideation and attempts in a representative sample of high school youth in a large urban midwestern school district sexual orientation is of particular interest because research consistently indicates high rates of suicidal behavior among sexual minority youth in population and communitybased surveys of adolescents in the united states smy report rates of suicide attempts two to seven times higher than heterosexual peers fortunately most youth regardless of their sexual orientation do not consider or attempt suicide and while media reports highlight high rates of suicide among smy data on sexual orientation is not included on death certificates so the rates are largely unknown furthermore findings from and studies that do exist indicate mixed results experts understand the increased rate of suicidal behavior among smy by way of the sexual minority stress theory and its extension the psychological mediation framework together these theories posit that sexual minorities experience excess stress as compared to heterosexuals for example by way of peer victimization bullying discrimination hate crimes andharassment this stress may lead to negative health behaviors such as suicide ideation and attempts through psychological pathways characterized by variations in coping and emotion regulation strategies social support and cognitive processing whereas stress and a lack of support or poor coping may facilitate negative health behaviors research suggests that positive supports such as connectedness in a variety of domains buffers or protects against these outcomes a small but still consistent body of work discusses the protective effect of connectedness among smy on suicidal behavior a small qualitative study found that connectedness to families and peers prevented suicidal behavior among sexual minorities ages 14 to 22 in a large nationally representative survey of high school youth three separate studies found that parental andor teacher caring were negatively associated with suicidal tendencies sic among smy a study among a smaller statewide representative sample of high school youth found that perceived school staff support protected against multiple suicide attempts among smy even when controlling for school and individuallevel characteristics not surprisingly given excess victimization bullying and discrimination research also indicates that sexual minority youth have less social connectedness to family peers andor school this may suggest that the social connectedness they do have is even more critical for smy in preventing suicidal behaviors most prior work on the subject posits that social connectedness mediates the relationship between sexual orientation and suicidal behavior this may inadvertently suggest that a sexual minority orientation causes elevated suicide risk because a lack of connectedness is a risk factor for suicide we place this squarely as the key variable of interest and then test the moderating effect of sexual orientation on this relationship in other words if sexual minorities have more stress and fewer social connections then protective factors may exert an even greater impact on their risk of suicidal behavior in this study we sought first to confirm previous findings and to test whether social connectedness across select domains of the social ecology each independently decreases risk of suicidal behavior for all youth next we attempted to identify the relative importance of select social connectedness types on suicidal behavior among all youth finally we examined whether the effect of social connectedness varies by sexual orientation methods sample the yrbs monitors health risk behaviors that contribute to the leading causes of death and disability in the united states including suicide ideation and attempts it includes national stateterritorialtribal government and local schoolbased surveys of high school students each uses a crosssectional twostage cluster sampling strategy to produce representative samples of students in their respective jurisdictions jurisdictions may add optional survey items four local areas inquired about social connectedness and sexual orientation in recent survey administrations only one milwaukee included questions on the multiple types of connectedness of interest to this study thus the current study pooled data from the 2007 and 2009 milwaukee yrbs measures suicide ideationsuicide ideation was assessed by the single item during the past 12 months did you ever seriously consider attempting suicide suicide attemptssuicide attempts were measured by the question during the past 12 months how many times did you actually attempt suicide responses corresponding to 0 attempts were coded as no and responses corresponding to 1 or more attempts were coded as yes while our previous work suggested the importance of measuring medically serious attempts given its possible indication of greater risk of future suicide we were unable to examine this measure here given its insufficient sample size social connectednesssocial connectedness is a commonly referenced protective factor in suicide prevention research and yet no standardized definition exists prior works suggests that family school and other adult connectedness are important components of this larger construct as such we use the following variables as proxies of connectedness family connectedness was measured by the question do you agree or disagree that your family loves you and gives you help and support when you need it response options were measured on a 5point scale ranging from 1 to 5 students who responded agree or strongly agree were coded as having family connectedness school connectedness was measured by the question do you agree or disagree that you feel like you belong at this school again students responding agree or strongly agree were coded as having school connectedness other adult connectedness was measured by the item besides your parents how many adults would you feel comfortable seeking help from if you had an important question affecting your life youth reporting feeling comfortable seeking help from one or more adults were coded as connected to other adults sexual orientationsexual orientation is often defined by three questions for the purposes of this study and based on limited available data we measured sexual behavior as a rough proxy of sexual orientation sexual behavior referred to as sexual orientation here was defined by the crosstabulation of two questions what is your sex and during your life with whom have you had sexual contact response options to the latter included females males females and males and i have never had sexual contact given sample size limitations we pooled data on sexual minority youth so that youth who reported either samesex or bothsex contacts were defined as sexual minorities youth with oppositesex contacts only were defined as heterosexuals youth without any sexual contact were excluded because their sexual orientation was unknown per our definition demographic and other variablesmeasures of student sex raceethnicity and grade were also measured along with year of data collection measures of common suicide risk factors such as depression and substance abuse were omitted from analyses as these variables are likely on the causal pathway statistical analyses we defined two analytic samples sample 1 included complete case data for fully adjusted regression models measuring suicide ideation sample 2 included complete case data for models predicting suicide attempts we conducted missing data analysis to determine whether data were missing at random the distribution of demographic characteristics and connectedness variables stratified by sexual orientation are described in table 1 the prevalence of suicide ideation and attempts by demographic characteristics and connectedness domains stratified by sexual orientation are examined in table 2 group differences were examined via chisquare tests of association a series of multivariable logistic regression analyses examined the main effect of each social connectedness variable modeled singly on suicide ideation and attempts next all types of connectedness were modeled together to assess their relative importance a single interaction term sexual orientation × was added to models 13 to test effect modification finally all types of connectedness and any significant interaction terms were modeled simultaneously the average marginal probabilities were then calculated and plotted these probabilities allow for comparisons of predicted outcomes between sexual minorities and heterosexuals after controlling for differences in covariate distributions between groups all logistic regression models controlled for sex raceethnicity grade and year analyses were conducted on scaled weighted data using sas v 93 and sudaan v 110 to adjust for the complex sampling strategy of the yrbs and student nonresponse each survey year is independent of the other with independently drawn random samples a prior cdc report also combined data across years and served as a model weights were adjusted when combining data across years per cdc documentation results sample description the pooled data from the 2007 and 2009 milwaukee yrbs included 3733 youth sample 1 and sample 2 comprised 2290 and 1818 youth with complete data respectively and 1106 youth were excluded because of not having had any sexual contact as shown in table 1 girls comprised just under 50 of the samples distribution of students by grade was roughly equivalent and the majority of students were of nonhispanic black sixteen was the mean age across the samples more than 80 of youth felt connected to families and other adults and about 59 felt connected to their school in sample 1 of all youths who were connected with families 63 were connected with schools 877 were connected with other adults and 558 were connected with both schools and other adults in sample 2 of all youths who were connected with families 636 were connected with schools 875 were connected with other adults and 563 were connected with both schools and other adults sexual minorities comprised about 12 of each sample in sample 1 the unweighted numbers of youths in the samesex only and bothsex categories were 114 and 169 respectively in sample 2 the unweighted numbers of youths in the samesex only and bothsex categories were 92 and 142 respectively among sexual minorities females comprised about 60 of the sample and about 60 were black fifteen percent were other raceethnicities sexual minorities reported less connectedness to families and schools compared to heterosexuals as determined by chisquare tests p 01 complete data were available for 87 of youth in sample 1 the sample examining suicide ideation the group with missing data had significantly fewer 11th and 12th graders white students and less support from adults outside the family but significantly greater percentages of males 10th graders and smy compared with the complete case data about 69 of youth in sample 2 the sample examining suicide attempts had complete data the missing group had significantly fewer white students and less support from adults outside the family but significantly higher percentages of males black students and 10th graders the potential impact of these differences is noted in the discussion about 15 of youth overall reported suicide ideation however more than one third of smy reported ideation versus about 12 of heterosexuals about 13 of all youth attempted suicide smy had a greater rate of attempts compared with heterosexuals suicide ideation differed by all demographic characteristics except grade while suicide attempts did not differ by any demographic characteristics suicide ideation was less prevalent among youth connected with family school and other adults than those without these connections attempts were less prevalent among youth connected to family or other adults smy had greater rates of suicide ideation and attempts than heterosexuals in nearly every demographic group and by each type of connectedness main effect models of social connectedness variables modeled singly indicated that with one exception social connectedness across social domains was associated with a protective effect for suicide ideation and attempts ranging from or 068 p 01 the associated effect of school connectedness on suicide ideation to or 029 p 001 the associated effect of family connectedness on suicide ideation school connectedness was not a significant protective factor for suicide attempts when all types of connectedness were modeled simultaneously family connectedness was inversely associated with suicide ideation and attempts and other adult connectedness was inversely associated with suicide attempts finally smy had a significantly associated increased odds of suicide ideation and attempts compared with heterosexuals ranging from or 336 to or 396 when interaction terms were tested in models 1′3′ results showed that sexual orientation moderated the relationship between adult connectedness and suicide ideation specifically other adult connectedness was more protective of suicide ideation among heterosexuals than smy no other interactions reached statistical significance this interaction was included in model 4′ where all types of connectedness were modeled simultaneously predicted marginal probabilities associated with models 1′4′ indicated that the probability of suicide ideation for heterosexual youth with connectedness ranged between 911 for heterosexuals without connectedness ideation ranged between 1425 in all cases heterosexuals without connectedness had a significantly greater marginal probability of ideation than heterosexuals with connectedness among smy with connectedness ideation ranged between 2533 finally among smy without connectedness ideation ranged between 2953 the difference between the marginal predicted probabilities for smy with and without family connectedness was significant so too was the difference between the marginal probabilities for smy with and without school connectedness significant however the difference between the two differencesthe difference between the marginal probabilities for heterosexuals with and without social connectedness minus the difference between the marginal probabilities for smy with and without social connectednesswas only significant in the case of other adult connectedness model 4′ shown on the right side of figure 1a depicts the marginal probabilities of family school and other adult connectedness and the significant interaction between sexual orientation and other adult connectedness the probability of suicide attempts for heterosexual youth with connectedness was between 811 for heterosexuals without connectedness attempts ranged between 923 family and other adult connectedness were significantly associated with fewer suicide attempts among heterosexuals among smy with connectedness attempts ranged from 2729 finally among smy without connectedness attempts ranged between 3644 the difference between the marginal predicted probabilities for smy with and without connectedness was only significant for family connectedness discussion for the current study we used minority stress theory the psychological mediation framework and the proxies of the larger social connectedness construct by which to frame our understanding of the association between sexual orientation and negative health outcomes as such we sought to first confirm what prior research suggested that family other adult and school connectedness would be inversely related to suicide ideation and behavior the main study question tested whether sexual orientation moderated this relationship the study results indicate that social connectedness was associated with a protective effect against suicide ideation and behavior among all youth that is with just one exception all types of connectedness when tested singly were inversely associated with both suicide ideation and attempts among all youth these findings are consistent with other work because connectedness in one area may be associated with connectedness in other areas the relative importance of each was tested simultaneously results here suggested that family connectedness was most consistently associated with a protective effect against suicide ideation and attempts these results are also consistent with prior studies with or without regard to sexual orientation with regard to school connectedness results were mixed that is when modeled singly school connectedness was inversely associated with suicide ideation among both smy and heterosexual youth however when modeled simultaneously with family and other adult connectedness the associated effect was attenuated and no longer significant this suggests that school connectedness is associated with family or other adult connectedness in ways that require additional study with regard to suicide attempts when school connectedness was modeled singly or simultaneously it was not significantly associated it is possible that protecting against suicide attempts a more severe outcome than suicide ideation requires more than a sense of school connectedness as measured smy report high rates of victimization and bullying at school so feelings of safety and trust in adults at school may trump school connectedness may modify the relationship of school connectedness on suicidal behavior or may be prerequisites to feeling school connectedness in the first place indeed studies find that school safety a positive school climate or policies of inclusion are associated with lower risk among smy and in some cases all youth for suicidal behavior effect modification by sexual orientation was found in the association between other adult connectedness and suicide ideation more specifically other adult connectedness was more protective among heterosexuals this does not mean that other adults are not important for smy instead it suggests that other adults play a more important role for heterosexuals this finding may suggest the central importance of family connectedness for smy or that smy have other unique protective factors that were not explored in the current study such as connectedness to sexual minority communities or level of outness that makes connectedness to other adults less necessary further research is needed results also point out the consistent associated protective effect of family connectedness on suicide ideation and attempts among sexual minority youth while we did not find that family was more important for smy it is worth highlighting that this was the only type of connectedness that was associated with decreased suicide attempts among smy this has important implications for further research and for prevention practice the current study has several strengths first the large majority of work in suicide prevention focuses solely on risk factor research and emphasizes differences between heterosexual and sexual minority youth a public health approach requires not only an understanding of unique risk factors but also protective factors that are both unique and shared among sexual orientation groups within the protective factor research literature few studies consider the effect of social connectedness based on sexual orientation this study examined social connectedness and sexual orientation from a strengths versus deficit perspective that may view sexual minorities as inherently at high risk of suicide ideation and attempts in doing so results support that smy are more similar to heterosexual youth than they are different with regard to what reduces suicidal behavior this finding helps to inform prevention strategies in the future and suggests that we may reduce the risk of suicide by enhancing at least one of the pathways noted by hatzenbuehler 2009encouraging social connectedness this may occur through encouragement of youth to seek out support as well as by encouraging adults to make themselves readily available and to be reliable and trustworthy further research is needed to understand the other pathways put forth by hatzenbuehler and whether they differ by sexual orientation and the implications for future prevention research policy and practice finally this study adds to the growing body of literature that uses yrbs data to examine the unique experiences of smy at the population level this study has several weaknesses first due to the lack of data availability a limited proxy measure of sexual orientation was used and therefore results cannot be generalized to all smy the extent of underor overreporting on sexual contact cannot be determined also limiting the sample to only youth with sexual contact may impact the strength of associations found between connectedness and suicide risks the level of connection of youth who are not sexually active may hold particular implications for smy whose onset of sexual activity can be affected by factors related to coming out and sexual minority stress finally with regard to measurement while we note the importance of separating groups of smy in our prior work power limitations did not allow us to independently examine youth with samesex contacts only and bisexual youth second the items measuring family and other adult support and school belongingness were used also imperfectly as proxies of the connectedness construct a fuller and more nuanced measure of connectedness is recommended in future surveys third it is unknown what percentage of students may have been interviewed both in 2007 and 2009 however the number of students surveyed is a small fraction of the total high school student population in milwaukee so the overlap is likely small fourth with regards to missing data our estimates of suicide attempts may be considered underestimates as the analytic sample was comprised of youth with more adult support as compared with the youth with missing data other differences between groups were not associated with suicidal behavior in pairwise comparisons with regard to suicide ideation the impact of missing data is ambiguous as the analytic sample had more support from other adults outside of the family fewer smy and more femalesthe former two are associated with less suicide ideation but the latter is associated with more suicide ideation it is also notable though not unprecedented that a large number of eligible youth skipped the suicide attempt question after having responded no to whether they considered suicide given potentially systematic missingnessselection bias toward people who did not attempt estimates of suicide attempts may be inflated youth excluded from the study were more likely to have less risk of ideation or attempts thereby leaving current findings overestimated but they were also more likely to be younger white and female so the impact on the analysis is again ambiguous fifth the findings apply only to youth who attended public school and therefore are not representative of all persons in this age group sexual minority students might represent a disproportionate percentage of high school dropouts and other youths who do not attend school finally these data are crosssectional so cause and effect cannot be determined and the measures of suicide ideation and attempts only relate to the past year and are therefore likely underestimates of suicidal ideation and behavior results of this study have implications for adolescent health and wellbeing and reduced risk of suicide ideation attempts and by association potential death by suicide results suggest that interventions designed to foster greater connectedness within families may help prevent youth suicidal behavior for all youth regardless of sexual orientation in addition helping families to better support their sexual minority children may promote positive wellbeing buffer any stress experienced at school or in the community and encourage helpseeking if or when discrimination or victimization is experienced additionally better integrating into community organizations that already exist to promote family connectedness and support for sexual minorities may reduce current risk among vulnerable youth in conclusion enhanced family connectedness is an important associated protective factor amenable to change and is at least one pathway among others that can be strengthened to enhance the wellbeing of all youth predicted marginal probabilities of suicide ideation and attempts by sexual orientation and connectedness type among sexually active milwaukee public school students 20072009 a note so sexual orientation smy sexual minority youth ns not significant y yes n no all probabilities based on logistic regression models controlling for sex grade race ethnicity and school year a each model includes an interaction term between sexual orientation and the social connectedness variable shown b significant interaction exists such that the difference between bar 1 and bar 2 is greater than the difference between bar 3 and bar 4 p 05 c indicates that difference in marginal probability between bar 1 and bar 2 is significant d indicates the difference between bar 3 and bar 4 is significant p 05 p 01 p 001

the impact of types of social connectednessfamily other adult and schoolon suicide ideation and attempts among all youth the relative impact of each type and effect modification by sexual orientation was assessed data were from the 20072009 milwaukee youth risk behavior surveys multivariable logistic regression analyses calculated the risk of suicide ideation and attempts by sexual orientation types of social connectedness and their interaction among all youth each type of connectedness modeled singly conferred protective effects for suicide ideation family and other adult connectedness protected against suicide attempts when modeled simultaneously family connectedness protected against ideation and attempts sexual orientation modified the association between other adult connectedness and suicide ideation findings suggest that family connectedness confers the most consistent protection among all youth and sexual orientation does not generally modify the association between connectedness and suicidal behavior suicide is the second leading cause of death among youth aged 10 to 24 cdc 2014a suicides are just the tip of the iceberg however many more youth consider plan and attempt suicide according to the youth risk behavior survey yrbs in the past 12 months 17 of high school students seriously considered suicide 13

introduction drawing on interviews with women before and after commercial scans this article explores the experience of commercial ultrasound during pregnancy as an example of family practices of social actions that construct and affirm connections between family members we draw on the work of morgan finch and others to argue that commercial ultrasound services are an example of the ways in which technologies and services come into play and provide resources for doing family in contemporary britain while the social significances of ultrasound examination and takehome sonograms have been broadly explored in the sociological and anthropological literatures ultrasound has not so far been explored in relation to family practices and the associated concept of family display we argue that these concepts help to make sense of why women make use of commercial ultrasound services and what meaning the resulting images might have beyond the scan room we seek to extend the theorising of ultrasound in relation to family identities and meanings beyond the oft repeated claim that sonograms are babys first picture utilising the emphases within the family practices literature on active social processes and shared understanding in the making of family connections focuses attention anew on the agency of women and families in making use of this technology and extends morgans work to explore how family connections are affirmed and reconfigured before the birth of a new family member routine and commercial ultrasound ultrasound has become a routine part of antenatal care in many parts of the world in the uk the national health service provides routine ultrasound free at the point of access in line with clear guidance on how ultrasound should be used in lowrisk pregnancy all women are offered a scan around 12 weeks gestation for dating the pregnancy and with the option of downs syndrome screening and a midpregnancy scan at 1821weeks for anomaly screening uptake is very high despite the formulation of clinical guidelines for use of ultrasound in pregnancy taylor has argued that ultrasound is a hybrid practice in that its social meanings are accommodated within clinical practice to some extent taylor gives the example of the provision of an additional screen so that women can watch the scan and the supply of take home images the particular way in which ultrasound services operate in the uk and how hybridity is operationalized has relevance for the analysis below hospitals in the uk typically provide one or two takehome images on request and for a fee most have a policy of allowing only one additional person to attend the scan appointment usually the womans life partner or birth partner the sex of the foetus is sometimes revealed at the midpregnancy scan on request but this is not given priority feminists have argued that the routine use of ultrasound in maternity care is an exemplar of medicalisation as one of the tools by which nnormal pregnancy has become defined as a risky condition in need of technological monitoring it seems certain that women have internalised the medicalization of pregnancy to some extent and yet it is also clear that ultrasound has become a social landmark for women during pregnancy and is often anticipated with pleasure scholars have pointed to the potential for tension between the social significance of ultrasound and its clinical aims with each threatening to disrupt the other not least because ultrasound has the potential to raise questions about the health of the pregnancy and the foetus requiring women to make complex decisions based on probabilities and risk calculations companies in the uk have offered ultrasound on a selfreferred basis and for a fee since the late 1990s the market has expanded rapidly since the 34d technology became available with a large number of companies across the country now in operation some focus exclusively on what might be termed nondiagnostic scans thereby arguably changing the nature of the hybrid and privileging the social meaning of ultrasound but others also offer scans with a clinical aim such as anomaly scans and nuchal translucency scans services offer a range of options including 2d and 34d ultrasound still prints of the image dvds of moving 4d imagery and other souvenirs such as key rings there is rarely any limit on the number of people who can accompany the woman to her appointment at the time of the study commercial scans typically cost close to £100 and upwards with discounts and gift vouchers sometimes available sidhu notes an overall sense of disapproval amongst medical professionals in relation to commercial scans published critiques from professional groups have been characterised by attempts to redraw the lines between medical and social use of the technology and to delegitimate the latter they rely on an assumption that women misunderstand the true purpose of ultrasound in pregnancy and have yet to take into account how and why accessing commercial ultrasound might make sense to women and families within their social and cultural context ultrasound and the family it has become a truism that a sonogram is babys first picture lisa mitchells book of this name sought to make strange problematise and explicate a cultural moment in which a greyandwhite blur could be meaningful as an image of a new family member to be shared smiled at and treasured seeing the foetus on the screen it is argued makes the pregnancy real for womenthe foetus exists and is healthy and perhaps especially for expectantfathers who do not have the embodied experience of carrying the foetus beyond this ultrasound has become a resource to begin to construct a social identity for the foetus as a person a gendered characterful family member who bears the markers of family resemblance through behaviour or appearance the role of foetal images in the public sphere in constructing foetal personhood has been much explored in the feminist literatures with particular reference to reproductive politics the wider familial implications for ultrasound have been less well explored although there are some indications in the literature that these may be significant kroløkke suggests that the scan room provides an arena in which expectantparents and to a lesser extent grandparents and siblings rehearse their new identities often in a manner highly proscribed by convention duden and han both briefly suggest that carrying displaying and sharing sonograms may be a way of signalling ones new status as a mother and ones adequacy in that role although ultrasound has yet to be explored specifically in relation to the family practices literature the existing literature suggests that family practices may be fundamental to the sociocultural significance of ultrasound han sums this up when she argues that routine ultrasound has become a ritual practice of american kinship and family doing and displaying family the term family practices originates in the work of morgan who proposed the term to conceptualise the flux and fluidity of family lives recognising the importance of peoples closest relationships while arguably avoiding the dangers of reification and normativity associated with the family the concept highlights the fluid nature of family relationships emphasising that our understandings of our family might not conform to social norms and might change over time but are nonetheless significant and meaningful the emphasis is on active processes on social action that is usually orientated to other family members we demonstrate to them and to others that they are part of our family that our relationship with them is familylike and in so doing create and reaffirm those connections family practices are social actors creatively constituting their own social world although always within structuring conditions and discursive limitations building on the family practices literature finch suggests that family needs to be seen to be done to be displayed the meaning of social actions needs to be understood by others in order to effectively function as family practices they must make sense within the wider system of meanings that provides their context display allows familylike relationships to be recognised by others they convey the message these are my family relationships and they work display can be verbal or visual and often makes use of particular tools or artefacts such as photographs and other keepsakes the literature around family practices and family display has focused on those family relationships that have the most difficulty in being recognised as such yet all families engage in family practices it is acknowledged that the need for display in particular varies in intensity at different times and in different circumstances for example lesbian couples having children may engage in display work as they negotiate new kin relationships for themselves and their children with their families of origin parents of stillborn babies may also feel a more intense need for family display because their identity as parents is not well recognised by those around them especially if they have no living children in circumstances such as this we need to explore those families and relationships which exist in our imaginations and memories since these are just as real this may equally apply to those not yet born if contemporary families are defined more by doing family things than by being a family then in what way might an ultrasound examination be defined as a family thing what resources do ultrasound scans and especially commercial ultrasound scans provide for doing and displaying family in asking these questions what new light might be shed on theorising about the role of the prenatal within family practices and display work the study women making appointments with a commercial scan provider were invited to take part in a short prescan interview as well as a longer followup interview a few days after their scan two locations operated by a single company were selected for recruitment both located in large cities with diverse populations in terms of ethnicity and socioeconomic status recruitment took place over a period of 11 months during 201213 a mix of weekday and weekend clinics was selected according to researcher availability recruitment continued until a diversity of women was recruited and data saturation reached all clients booking pregnancy scans on recruitment days received the study information sheet via email from the scan company at the time of booking and were invited to arrive early for their appointment to discuss the study with the researcher and complete the interview every effort was made not to disrupt the working of the clinic or to delay appointment times and this meant that seven prescan interviews were completed immediately after the scan women who revealed that their pregnancy was considered high risk by their usual care providers were excluded from this study followup interviews took place a few days later at a location of the participants choosing usually their home eightyeight clients received email invitations fortyeight participants were recruited giving a response rate of 55 for the prescan interviews of these twentyone participants completed the followup interview all interviews were conducted by julie roberts and alice verran all interviews were audio recorded with consent and anonymised at transcription the study was approved by nottingham research ethics committee 1 participants were between 8 and 37 weeks pregnant participants ranged in age from 18 years to 38 years with an average of 285 years participants in the follow up interviews were slightly older most identified as white british although the cost of commercial scans may be prohibitive to some our participants were not all affluent and reported a full range of educational backgrounds and employment statuses the most commonly booked scan was a twodimensional scan for determining foetal sex followed by a fourdimensional scan among interviewees who were interviewed twice the majority had booked a gender scan or a 4d scan the remaining participants had booked 2d scans to assess viability foetal growth to date the pregnancy or to determine foetal presentation this was broadly reflective of the overall provision at these sites the scan company provided 631 pregnancy scans at these two locations during the 11 months of the study of these 47 were 2d scans to determine foetal sex and 21 were 4d scans participants are referred to in the text below by numbers thus maintaining anonymity and demonstrating that illustrative examples are taken from across the sample prescan interviews were brief but rich and focused on womens reasons for coming to the scan appointment postscan interviews took place a few days later and were more detailed lasting up to an hour and explored womens experiences of pregnancy and antenatal care so far their reasons for booking a commercial scan their expectations and experiences of the scan and what they had so far done with the takehome pictures and recordings findings of the study in relation to the core research question why do women seek commercial ultrasound in pregnancy are reported elsewhere during inductive thematic analysis of the whole dataset family was identified as a theme worthy of further investigation in this secondary analysis interview excerpts coded as family were then read alongside the family practices literature each plugged into the other the preand postscan interview data was interrogated for examples of doing or displaying family the analysis is an exercise in thinking with theory in which both the phenomenon and the theoretical literature are interrogated together for new insights into both we do not assume that the participants stories are an accurate reflection of reality rather we recognise that their stories are partial and shaped in the context of their telling nonetheless they reflect at least some of the ways in which participants make sense of the experience of commercial ultrasound scans commercial ultrasound as family practice a family occasion routine ultrasound scans have become experiences to be shared between expectant parents fatherstobe in particular are expected to attend scan appointments and their attendance has become a sign of involved fathering so too with commercial scans couples generally attend together although the womans body is the object of visualisation mens participation is also required to mark this as a family occasion he just held my hand and it was really really nice and he was smiling… this experience as a couple may be particularly important when earlier opportunities are perceived to have been missed well its the first time hes able to join me so thats important for us i went for my 12 week scan and he couldnt be there…i thought id bring him along and he can see it too these remarks suggest that for women in a heterosexual relationship there was a sense in which mens absence from routine scans had to be explained and rectified if possible a commercial scan at a time and location of their choosing offers an opportunity to make up for this missed experience and an opportunity to display a cohesive couple and an involved father companions are by no means limited to male partners and might also be any combination of mothers sisters children nieces and nephews expectantgrandparents and friends its just a nice sort of family occasion we just want to try and make it a bit more family orientated the routine practice of ultrasound within nhs antenatal care usually restricts family involvement to expectantfathers or another birth partner and interviewees were aware of this hospital policy implies a fairly rigid definition of the dyadic family unit proper to pregnancy however the restriction on companions also helps to code routine scans as medical in focus it is we would argue a means to define routine scans as diagnostic against the encroachment of and tension with the social significances of ultrasound commercial scans allow women and couples to share the scan with as many people as they choose everyone wanted to come so i let them come the scan can take on the feel of a family outing to be anticipated and enjoyed my niece didnt even know where she was going until the morning when we got there i told her we were going on a little day trip we make a day of it dont we go for lunch see the baby and… stories of this particular day may be laid down in family history i remember saying to my daughter hes waving at you and her little face just lit up and i thought…i dont think ill ever forget that the significance of who attends scan appointments has so far received little critical or sociological attention we suggest that bringing an extended group of friends and family members to the scan may be a way of doing family of constituting and displaying a family group of those closest to you and who you hope will be close to the new baby women talked about this in terms of involving others with a vested interest in the pregnancy and it signals to others that their involvement in the pregnancy is welcome for one participant inviting her sister to her scan was a means of mending their relationship and of showing her sister that the relationship was healing me and my sister have always had quite a difficult relationship and i think were now both at that stage where were a bit older and a bit wiser and weve just really got the relationship back to how it used to be you know how close we were so that the scan was like bonding for us as well with me and my sister since commercial scan services do not restrict who can attend appointments this opens up the possibility of utilising the scan as a way of doing and displaying family it provides new flexibility in how invitations to observe the ultrasound examination might signify kin connections of course it could also open up womens bodies to unwelcome scrutiny we found no evidence of this in our study but without restrictions on who can accompany women might feel pressure to allow family members to attend whom they would rather exclude for one participant taking scan footage home was a way of involving her children without bringing them into the private space of the scan i didnt want my children there on saturday just in case there was anything highlighted but it was nice that we could bring away the dvd and we can show them so they were involved in that way for this mother the possibility that ultrasound examination could reveal health problems with the pregnancy is present in her thinking she wants to protect her children from what could potentially be a difficult experience particularly to protect them from her own emotional reaction to bad news but the take home images which commercial companies put more emphasis on providing than nhs scans provides a way of demonstrating to her children that they are involved in this family occasion we consider sharing ultrasound images in more detail below sharing sonograms compared to routine scan provision commercial ultrasound is available at more time points in pregnancy produces more images and different types of images including 3d and moving 4d imagery when women chose to buy these additional scans they create more opportunities to share the resultant images when we asked our interviewees whether they had shown their take home images with anyone almost everyone had shared them some gave the impression that sharing the images was almost indiscriminate well ive showed them to everybody and now they are on my fridge ive got them in my handbag because ive been showing everyone sharing the pictures in this way was a way of displaying their pregnancy and their impending motherhood it might also have been a way of displaying their consumption of ultrasound technology it has been argued that consuming all available technologies during pregnancy is a sign of responsible mothering and that ultrasound use specifically may be a sign of good and even modern parenting other participants were more selective about who they shared the images with while selectively sharing pictures might serve similar functions of displaying pregnancy and motherhood choosing who was shown the ultrasound images constructed and affirmed how the family was defined and bounded i showed mum and dad and i showed my brother as well but i think its one of those things im sure i kinda went oh over someones picture before and thinking oh it doesnt really look like anything…we showed them to parents in law as well but no no one else i dont think id inflict that on anyone laughs the legibility of the image plays an intriguing role in constructing these relationships in this example the fact that the images are shared with someone despite being illegible is precisely what marks the audience as family showing incomprehensible pictures is something to be inflicted only on those close to you a number of scholars have questioned how blackandwhite cloudlike pictures can function so effectively as baby pictures and as images of personhood despite recent claims for the everincreasing clarity and realism of ultrasound imagery difficulties remain for the untrained eye while technological advances and cultural familiarity with the iconic foetal image have arguably resulted in greater clarity images nonetheless vary in legibility and if the latest 34d images are less cloudlike they nonetheless remain semiotic objects that require interpretation to be meaningful a minority of participants expressed the view that 3d images could look weird rather than cute and pleasing therefore it seems clear that the meaning of sharing ultrasound images almost certainly lies outside the content of the images themselves in the act of sharing as a form of doing family sharing the pictures might be a oneoff event a prop to announce the pregnancy or the newly identified sex of the baby or it may be a shared viewing experience to be repeated and used as a prompt to ongoing dialogue about the new family member the children theyve watched it dvd several times and its actually programmed into the telly…when they were first told it was a girl they were disappointed…not overly disappointed just like oh i wanted a brother but when they saw the dvd they were just astounded they loved it…now its their baby sister and were going to rule the house…and they talk about the dvd on a daily basis…i know we are going to be watching it again and again for this mother the dvd of moving 4d ultrasound imagery is a conduit to discussion with her children about the new baby about having a new sister about the new configuration of the household the new family begins to come into existence even before the baby is born with the new sister having a virtual presence programmed into the television this visualised presence is seen as being more concrete easier for the children to understand it is also a means of overcoming the childrens ambivalence the babys gender perhaps through rehearsing their relationship with the new baby before the dvd they see mummy is just getting fatter really sonograms are not only shown to other people but sometimes copies are provided for the other people to keep look at and display parent and parentsinlaw are sometimes given to choice of images to keep suggesting a comparison with photographs of a newborn or school portraits of an older child family members on both sides of the family need to be treated equally in the distribution of pictures we got quite a few pictures printed off so we could leave a picture with both sets of inlaws and then weve got a picture for ourselves remarks like this one suggest a sense of familial obligation or at least a sense that gifting copies holds significance as a marker of connection and intimacy and that it needs to be done equitably this notion contains within it an assumption that sharing sonograms and providing copies will be understood by parentsinlaw as a family practice as a signifier of kin connection and therefore that offence might be caused if each side is not treated similarly although we only interviewed expectantmothers the data provides glimpses into the fate of ultrasound images after they are gifted to others mums mega excited…she keeps the pictures on her bedside table and takes them to work with her here the sonogram becomes the signifier of a grandchild and is proudly displayed and carried by an expectantgrandmother as an outward sign of her changing and growing family the picture by the bed plays a role in her own display work as she takes on a new family identity in addition to her existing ones talking about resemblance sharing ultrasound images can be a prompt to talking about family resemblances mitchell describing how expectantparents claimed to see family resemblances in 2d blackandwhite sonograms characterised this as one of the ways in which families begin the process of weaving the fetus into a network of kinship relations and conventionalized roles family resemblances are in some ways deeply personal but are also publicly perceived constructed commented on and speculated about the fascination of resemblance mason argues is in how resemblance speaks to biogenetic connectedness without being a direct or predictable reflection of it rather resemblances speak of the potential for affinity therefore talking about resemblances becomes a resource to affirm connectedness or indeed distance and therefore may also be a family practice many saw resemblances between the foetus and themselves their partners or their children consistent with what mason calls the sport of spotting family resemblances she looked like her dad she really did my husbands got a dimple here in his chin and you could see that and you could see her nose was like quite a biggish nose really you could see exactly what she looked like for one participant resemblance talk enacted interconnection with several members of her extended family yes its got my cheeks and my chin hasnt it and then its probably got my nose as well and your mouth…it just looks like me yes it looks like my nephew as well my sisters little boy… the first thing we both said was oh my god that looks like name of nephew did when he was a baby and because my sister had had a scan 4d scan with him it was really similar but me and my sister and my mum and all that side were all really alike arent we must have strong genes or something because we all… like my sisters little girl looks like shes mine everybody thinks shes mine because she looks more like me than my sister here the foetus is situated already within an extended family of people who all look alike resemblance to the expectantfather is noted only very briefly …and your mouth resemblance is seen as a marker of biological connectedness we must have strong genes or something but primarily for one side of the family we do not know whether the expectantfather saw a different set of resemblances but here talk of resemblance weaves the foetus into the mothers family identifying family resemblances can be a collective activity one woman described how when she showed her scan pictures to her family they speculated about who the baby looked like although she could not see a resemblance it doesnt look like anybody a couple describe showing a 3d scan picture to their 10 month old daughter they describe the likeness to their daughter as uncanny and describe a similar reaction from the infant she actually looked at it and she was shocked because she could see that resemblance that a 10month old infant can perceive a resemblance is offered as evidence of its reality resemblances are both real and imagined notwithstanding the imaging capabilities of the latest ultrasound technology features are selectively paid attention to subjectively interpreted if family practices rely on being recognised as such by others they rely here not on the clarity of the image but on a shared understanding that ultrasound can demonstrate resemblance and that resemblance is a marker of family connection biogenetic or otherwise resemblance talk is a way of recognising family connections and of demonstrating to others that the connection is significant to you resemblance talk is also a way of imagining who the baby will be like and how they will fit into the new family conclusions in this article we have explored the proposal that commercial ultrasound examination and the social interactions around them can be theorised as family practices this analysis helps us to understand why women might make use of commercial ultrasound services providing an alternative or a supplement to the notion that ultrasound is primarily an extension of the medical gaze we are mindful that ultrasound examination for many women is primarily a medical experience often accompanied by considerable anxiety others will have some ambivalence about their pregnancy the analysis presented here of commercial ultrasound as family practice may not resonate with these experiences however for many women and families commercial ultrasound primarily holds social meanings even if these are entangled with a desire for reassurance reassurance as a theme is explored in more detail in our other article relating to this project our research is limited by a focus on women who have accessed commercial scans more diversity of opinion might be expected if we had included women who had considered a commercial scan or perhaps been prompted to consider it by a partner or family member and rejected the idea it may be that women booking a scan in the second or third trimester of their pregnancies may be those most interested in reifying and celebrating foetal personhood however previous research suggests that women who feel ambivalent about their pregnancy do also access commercial scan services it may be that women who feel some degree of ambivalence about foetal personhood were less likely to participate in an interview study the short time lapse between the first and second interviews is also a limitation we were able to capture womens views before and after the scan but with just a few days between interviews participants had had relatively little time to share their images and talk about the scan we might predict that the personal significance of sonograms will change or decline over time cohns study of participants in a mental health research study who were given printed copies of their brain scans suggests that the significance of the images faded with time as the interpretation given by the radiologist was lost to memory and as people who were shown the image questioned its meaning we might have observed a similar effect here over a longer time period although in this context the conversational norms of responding to family sonograms are more clearly defined and so people are less likely to challenge their meaning and as we have argued the clarity of the image seems to be of little significance with family practices of sharing sonograms it is also unclear so far how the birth of the baby impacts on the significance of sonograms by asking how commercial ultrasound might be implicated in family practices we have extended the notion of sonograms as babys first picture to consider a wider conceptualisation of how sharing the examination experience the resulting pictures and resemblance talk might begin to construct a sense of how the family will be reconfigured with a new addition with some exceptions the relationship between sonograms and fathers siblings grandparents and others have not yet been fully explored in the multidisciplinary literature around ultrasound and this article contributes to this conceptual project the role of commercial ultrasound in family practices is more than another opportunity to acquire babys first picture attending the appointment and sharing the pictures provide opportunities to imagine what the family will look like with the new addition we have argued that inviting people to come to the scan choosing who to show the pictures to deciding who to make copies for are all ways of signalling to oneself and to others who will be part of the new babys family making these choices is also part of rehearsing the parent role and those who share in these activities also practice their role as father grandparent or sibling this includes taking responsibility for managing who is invited and protecting others from potentially difficult experiences for example in the event of a prenatal diagnosis the presence of the images in the house on the bedside programmed into the television provides a prompt to imagine the soon to be changed nature of the family it is perhaps easy to treat these as fairly frivolous practices but placing these actions within a framework of family practices encourages us to take them seriously as social actions with significance for individuals and family groups smart suggests that we should take seriously those relationships and families that exist in our imaginations in the spirit of this suggestion we have explored the prenatal in the context of family practices han has argued that sonograms replace the imagined foetus as more tangible signs however we take a different approach and argue that rather than replacing the imagined foetus sonograms act as prompts to imagining the new baby and the new family if sonograms are babys first picture the argument can be made that like photographs they are invitations to deduction speculation and fantasy they invite us to imagine a new person who will join our family this does not require us to conflate the developing foetus with the newborn baby but only to acknowledge the role of the visual and of keepsakes in family practices and family display positing a role for imagination serves to emphasise that family is constructed in social actions and that no easy boundary can be constructed to define the family it underscores the fact that individuals create their family through social action even if their family is not easily recognised as such by others as such imagination is critical to the progressive nature of family practices as a concept and yet imagination has so far been underexplored in relation to family practices and indeed in relation to social life more broadly commercial ultrasound provides resources for doing family that are both similar to and distinct from routine care in the commercial sector women have more choice over when to have the scan how many people to bring with them how many images to take home whether to view threedimensional imagery whether to take a dvd recording and so on women can choose the most pleasing images to take home perhaps those that are most meaningful to them because they demonstrate family resemblance or because they serve as reminders of meaningful moments for example a waving foetus and a daughters reaction to that commercial ultrasound practices provide a particularly fertile ground for explorations because there is more flexibility in their form and use compared to nhs antenatal care this flexibility is relevant because family practices are determined to some extent by dominant cultural scripts and norms and to some extent by individual circumstances medical discourse seeks to code ultrasound as a technology for clinical assessment of the foetus and local and national policies limit who can attend scans how often scans are performed and how takehome pictures are provided women having ultrasound scans may find there is a script of good mothering to adhere to that includes showing sufficient interest in the health of the foetus while not showing too much interest in the sex or in the takehome pictures arguably women have more choice about whether to engage with the technology at all in the commercial setting whereas the literature suggests that routine scans have become so accepted that they are rarely presented to women as a choice and women rarely exercise informed choice this is not to argue that the meaning and significance of ultrasound examination in the commercial sector is infinitely flexible other cultural scripts will be at work here for example those around involved fathering around sonograms as babys first picture and family photography more broadly around consumption and pregnancy we also wish to avoid suggesting that the flexibility to shape ultrasound practice is necessarily emancipatory for example as we suggested above the removal of any limits on who can attend the scan could potentially open up womens bodies to unwelcome scrutiny although we found very little evidence of this in our sample we know that the family is not always a place of safety our analysis raises questions about the extent to which technological innovation and commercial interests might shape what counts as a family practice for example it has been suggested that kodaks marketing in the late nineteenth and early twentieth centuries impacted on consumers ideas about how they could represent and remember their lives through snapshots the uk market in commercial scans expanded rapidly as 34d technology became cheaper and smaller while the services and products offered by commercial providers draw to a greater or lesser extent on norms of family photography and keepsakes questions remain about how the availability of commercial scans may be shaping family practices as much as the medical professions were reported ten years ago as disapproving of commercial ultrasound because they believed women are misunderstanding the proper purpose of the technology it seems clear now that it is not only medical discourses that shape how women engage with ultrasound but a much wider collection of ideas about how to do family in turn how to do and display family will be shaped by available technologies author biographies julie roberts is research fellow in maternity care at the university of nottingham her research interests lie in understanding pregnancy and birth in their social context she is the author of the visualised foetus a cultural and political analysis of ultrasound imagery

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introduction in this paper knowledge from research on the consequences of sexual violence against girls and women and their search for internal healing is synthesized using the method of theory synthesis the significance of the metoo movement in womens search for internal healing after sexual violence is also explored and discussed when a number of women launched a campaign against sexual violence in 2016 an antiviolence sentiment grew through which women refused to live in silence about the suffering that many of them had endured because of sexual violence women told their stories publicly as part of a movement characterized by support and solidarity their suffering had previously been unspoken an unknown private issue and this suffering was endured by many as a shameful personal experience the metoo wave began in the united states within an organization founded by tarana burke to raise awareness of the prevalence of sexual violence and to support and empower young women of african descent who had been victims of sexual violence in october 2017 the metoo movement was taken a step further and became integrated via a hashtag on social media actress alyssa milano was the first to use the metoo hashtag and encouraged other women with experiences of sexual harassment and sexual violence to do the same 1 since then the metoo movement has reached at least 85 countries and has drawn a great deal of attention to the scale and severity of sexual violence in the metoo 2 of 14 revolution female victims demanded that they be listened to and described systematic genderbased discrimination 2 women have had difficulty sharing their experiences of sexual violence for fear of the consequences the movement has shown that sexual violence against women is still a major problem in most cultures and is often linked to differences in power in a study of 735 girls between the ages of 15 and 19 in the united states for example about half of them reported being sexually abused in some way by men who used their position of power against them according to the study many girls experienced a great deal of pressure to participate in sexual activities that they were not ready for and 1228 of the girls reported gross sexual violence 3 in the wake of the metoo movement women around the world have revolted against sexual violence and the strength of their voices has led to better access to appropriate resources for survivors and thus opportunities for a better quality of life 4 an international conference on the impact of the metoo movement was held in reykjavík iceland in 2019 and was part of the icelandic presidency of the nordic council of ministers the emphasis was on theoretical and general discussions of the status of women and violence against them due to genderbased inequality and the violence and harassment around the world that the movement exposed the conference concluded that it was important to achieve lasting changes in culture attitudes and societal values including the elimination of deeprooted gender discrimination and the emphasis on zero tolerance towards all forms of sexual harassment and violence why is it important to address sexual violence what are the consequences of such violence against women and girls the purpose of this theory synthesis is to examine women and girls own experiences of the consequences of sexual violence in childhood adolescence and adulthood and what works best for them in their search for internal healing therefore the research questions are as follows firstly what are the consequences of sexual violence for women and girls secondly what is most useful to them in their search for internal healing in this paper the authors will also explore and discuss the significance of the metoo movement regarding both understanding the consequences and the potential utility of healing before reviewing theory synthesis the method chosen to answer the research questions the theoretical background upon which the theory synthesis is based will be explained in that regard psychoneuroimmunology research is the most important because it provides an understanding of the close relationship between body mind and soul it therefore gives us an important understanding of the consequences of sexual violence on women and girls moreover it has provided increased knowledge of the vulnerability of individual systems to toxic stress which occurs in victims of sexual violence and an increased understanding of the farreaching consequences of such traumas in summary the aim of the paper is to explore and better understand the consequences of sexual violence for women and girls and their search for inner healing theoretical background our body is designed to be healthy and has builtin balance management to maintain the equilibrium of the various systems of the body when women and girls are sexually violated everything in the body tries to prevent the immune system from being damaged and therefore decreasing the chances of the person suffering from a physical or mental illness psychoneuroimmunology is an interdisciplinary field of study in which the emphasis is on understanding the relationship between what happens to us and the resulting consequences for the central nervous system endocrine system and the immune system studies in psychoneuroimmunology include an examination of the complex interactions between consciousness the central nervous system and the bodys defenses against infections and abnormal cell growth 5 the body responds to major threats such as sexual violence by secreting catecholamines norepinephrine and dopamine this is a biological process that has often been called a fight or flight response this reaction puts the body in a state of reaction and prepares it for conflict however it is more appropriate to call it fight flight or freeze response because a woman or a girl who is sexually violated is much more likely to freeze and it can take a long time for her to thaw again the hypothalamuspituitaryadrenal axis responds with reactions involving a chain of events the hypothalamus releases corticotrophinreleasing hormone which causes the pituitary gland to release adrenocorticotropic hormone which causes the adrenal glands to release corticosteroids trauma such as sexual violence can therefore cause longterm stress which can activate the hpa axis and the autonomic nervous system this can manifest as increased or abnormally low levels of cortisol in the blood and low or increased levels of norepinephrine 6 psychological stress can trigger the activation of the amygdala and consequently the autonomic nervous system which triggers the immune system and an inflammatory response inflammation can increase the risk of psychopathology by altering the metabolism of neurotransmitters the effect is dose dependent ie the more serious the sexual violence the more serious the inflammation inflammation also increases the risk of cardiovascular disease and type 2 diabetes by affecting the exacerbation of atherosclerosis and the increase in insulin sensitivity 7 physical and psychological stress due to sexual violence can therefore cause inflammatory reactions and thus a whole host of diseases excessive and uncontrollable stress has sometimes been called toxic stress which can reduce the activity of the immune system it reduces the number of bcells and tcells and has the effect of reducing the number and function of natural killer cells killer cells can kill harmful cells such as foreign cells cancer cells and virusinfected cells they are therefore very important in the bodys defenses they are activated by interferons that are part of the nonspecific immune system human stress responses have several controls and balances built in and designed to prevent hyperactivity unfortunately in the case of overwhelming or toxic stress such as being sexually assaulted normal controls and balances sometimes fail causing the inflammatory response to be abnormally high for example cortisol which is usually antiinflammatory and retains proinflammatory cytokines can alter its activity if stress is very high and can increase the activity of interleukin1 and interleukin6 rather than inhibiting them when too many inflammatory cytokines or other inflammatory factors are present people become more susceptible to disease 8 traumatic events increase the levels of inflammatory cytokines in the survivor elevated levels of cytokines are associated with an increased risk of serious health problems including coronary heart disease myocardial infarction chronic pain premature aging immune response impaired wound healing and alzheimers disease to name only a few 9 depression is thought to be a psychological response to overwhelming stress and often overlaps with physical problems including asthma rheumatoid arthritis cardiovascular disease cancer and neurological disorders 10 inflammation can be the key factor that connects stress and physiological changes 9 there is growing evidence of a twoway link between major depression and cardiovascular disease 11 and inflammation is thought to be the link between the two 12 depression which may be a psychological response to toxic stress may make people more susceptible to other diseases because it reduces the activity of killer cells severe depression which accompanies negative events in life such as sexual violence suggests that the more depressed someone is the lower the activity of killer cells is furthermore severe emotional trauma such as sexual violence can adversely affect the function of white blood cells by weakening their response to virusinfected cells and cancer cells vaccination has been less effective and wounds heal more slowly in people who have suffered trauma 13 toxic stress has also been linked to coronary heart disease thrombosis and myocardial infarction due to its effects on the immune system it can also have a direct effect on the interaction of the nervous system and the immune system and their longterm functioning 14 sexual violence is incredibly shocking for victims and the impact of such a shock is immense the results of many studies have shown a strong link between trauma stress and inflammatory processes the central nervous system endocrine system and immune system are important systems in the body that communicate abundantly with each other and are key elements in health and wellbeing the immune system receives and sends messages but it is not the endpoint as previously thought 15 research into measurable interactions between these systems enhances our understanding of the psychological link between trauma such as sexual violence and disease chronic psychosocial stress caused by sexual violence is an important environmental factor in the development of obesity 16 prolonged pressure on the adrenal system in association with chronic stress can disrupt the metabolic rate and cause fat accumulation hypertension and diabetes obesity and metabolic disorders are more common in people with posttraumatic stress disorder which is one of the common causes of sexual violence 17 stress and depression have also been linked to increased inflammatory responses and risk of disease including obesity type 2 diabetes and cardiovascular disease 18 19 20 weight gain can then activate the inflammatory response by increasing the production of il6 in enlarged adipose tissue and white blood cells by leptin 21 the result of research in psychoneuroimmunology is that toxic stress caused by sexual violence can directly lead to obesity materials and methods news coverage of the metoo movement has often revealed a great deal of ignorance about the serious longterm consequences sexual violence has on women and girls in response the authors decided a summary and theory synthesis of some of their own existing research results about the longterm consequences of sexual violence on women and girls was timely in addition since only a portion of the research data is published in each study there is a large amount of data that researchers have collected and have access to giving them the opportunity to gain an even deeper understanding of the subject when researchers do multiple studies on different aspects of the same subject it is therefore productive to work in more depth with the research data and develop a theory using the research results from these studies this is the aim of theory synthesis walker and avant 22 believe that theory synthesis is an underused method of theory development and needs to be used much more to further the development of applied science the main aim of theory synthesis is to formulate a theory from the available research results this enables theorists to synthesize a considerable amount of data into a single integrated theory theory synthesis in this way involves three main steps which are described in table 1 table 1 theory synthesis an overview of the method and how it was used in this study step description overview of what the authors did step 1 the main concepts and main descriptions specified from the studies used we used our own databases and analyses of them as a basis for the theory synthesis these are studies on the consequences of sexual violence against women and girls as well as their search for internal healing following such violence step 2 in what has been written before we look for items related to the main concepts or main descriptions and examine the relationship we used the table from step one and compared it with research results in peerreviewed journals where the consequences of sexual violence against women and girls were examined from the perspective of the women themselves keywords from the results of step 1 were used and with constant comparison it was possible to examine the consequences of sexual violence against women and girls many of the articles were directly related to the consequences of sexual violence for female survivors while others were only partially related but could provide important information nonetheless there was no change due to research in the field of the consequences of sexual violence on women but research results from psychoneuroimmunology gave more depth to the results table 1 cont step description overview of what the authors did step 3 the concepts and descriptions that pertain to what the theory is about are systematically grouped together and presented in the text in table or in figure after compiling detailed descriptions of the consequences of sexual violence on women and girls we presented the results in the text and in a figure the text describes the consequences of sexual violence in childhood during adolescence and in adulthood the consequences are physical mental and social the figure describes the consequences of sexual violence on women and girls and how the unity of mind body and soul must be considered when considering treatment table 2 the seven published studies used in step 1 of the theory synthesis our studies key conclusions for the theory 1 sigurdardottir s halldorsdottir s time does not heal all wounds 23 consequences of violence against women physical symptoms multiple health problems in the lower abdomen widespread and chronic pain sleeping problems eating disorders fibromyalgia chronic fatigue cardiovascular problems and diabetes psychiatric symptoms depression anxiety stress fear poor selfesteem shame guilt selfharming behavior alcohol and drug abuse severe suicidal ideation anger sadness melancholy and disappointment personality disorder trauma disorder and social phobia social symptoms difficulty with touch sex and relationships with spouses difficulty trusting men exposure to all kinds of violence in adulthood recurring physical mental andor sexual violence in a relationship or rape great anxiety stress and strain as a parent seeking health services on a large scale but not reporting the violencereceiving little support but a large amount of medication 2 kristinsdottir a halldorsdottir s constant stress fear and anxiety the experience of women who have experienced intimate partner violence during pregnancy and at other times 24 consequences of violence against women constant stress fear fright and anxiety depression and great distress increased violence during pregnancy postpartum depression broken selfconfidence and decreased selfesteem heavy flashbacks difficult memories and nightmares loneliness and isolation guilt and shame severe physical symptoms and eating disorders feeling they cannot stand by themselves difficulty trusting others strong feelings of rejection 3 sigurdardottir s halldorsdottir s silent suffering longterm consequences of sexual violence in youth for health and wellbeing of men and women 25 consequences of violence against women in childhood emotional pain agony and anguish always alert always expecting something bad and felt their personal defenses had been broken down selfblame and guilt great secrecy intimidation and humiliation dissociation of body and soul great fear and constant insecurity not reporting the violence and receiving even more violence if they try adolescence was characterized by bullying and great distress much teasing few or no friends isolation directed their emotions inward and were repressed usually experienced learning difficulties dyslexia and attention deficit most tried to be invisible lived in constant fear some started to use alcohol during adolescence to numb their emotional pain had a variety of physical problems eg myositis and pain gastritis migraine headache gastrointestinal problems dizziness and fainting some engaged in selfharming behaviors and had suicidal thoughts and some made suicide attempts in adulthood many problems in the lower abdomen unexplained pain difficulty sleeping myositis anxiety and depression trying to numb the inner pain by using food alcohol or drugs selfdestructive behavior selfharming behavior a strong feeling of rejection escape fear and isolation severe unexplained malaise very broken selfimage little to no selfconfidence and selfesteem enormous emotional pain failing to keep a job many are on disability allowance and wellbeing 26 consequences of violence against women in childhood they always felt different after the violence could not sleep at night and struggled with multiple psychological problems experienced attention deficit or attention deficit hyperactivity disorder in adolescence a difficult adolescence eating disorders drinking alcohol very young thoughts of suicide and in some cases suicide attempts in adult years severe pain in the uterine area rheumatoid arthritis felt they lost the joy of life and the will to live following the violence depression always tired and lacking in energy strong feeling of rejection phobia and isolation difficulty maintaining normal relationships with others marriage problems 5 sigurdardottir s halldorsdottir s bender ss consequences of childhood sexual abuse for health and wellbeing gender similarities and differences 27 consequences of violence against women in childhood their emotional pain was directed inward and caused inner agony and despair as well as deep and silent suffering they experienced disconnection between their body and soul as well as great secrecy threat fear and humiliation they were always insecure felt the need to be constantly vigilant and always expected something bad to happen they felt that their defenses had been broken down and experienced great vulnerability they felt they were held responsible for the violence in adolescence experienced a broken selfimage and a variety of physical and mental problems in adulthood all have struggled with problems in the lower abdomen unexplained pain miscarriage ectopic pregnancies multiple inflammation and problems that often ended in hysterectomy all of them have struggled with sleeping problems and various physical problems such as fibromyalgia high blood pressure dizziness endocrine problems diabetes lymphatic problems nervous system problems asthma epilepsy and eating disorders 6 sigurdardottir s halldorsdottir s screaming body and silent healthcare providers a case study with a childhood sexual abuse survivor 28 consequences of the violence against one woman this was a case study since childhood she has experienced complex and farreaching physical and health consequences such as recurrent abdominal pain widespread and chronic pain sleeping problems indigestion chronic back pain fibromyalgia musculoskeletal problems recurrent urinary tract infections irregular periods ovarian cysts ectopic pregnancies endometrial hyperplasia inflammation of the ovaries uterine problems and ovarian cancer she told health professionals about her experience of sexual violence to increase their understanding of her health problems but they remained silent and were unable to provide her with traumainformed healthcare 7 sigurdardottir s halldorsdottir s bender ss agnarsdottir g personal resurrection female childhood sexual abuse survivors experience of the wellnessprogram 29 searching for internal healing of the consequences of sexual violence the wellness program was designed to promote the inner healing of women who had experienced sexual violence the program lasted for 10 weeks with an organized program of 20 hours per week a group of healthcare professionals used a holistic approach and provided holistic therapy individually as well as group therapy with an emphasis on the unity of body mind and soul in their own view the most useful treatments for the women were as follows group therapy where the emphasis was on sharing their experiences and gaining the support of other women who had experienced the same as well as empowerment from supportive professionals deep relaxation and hypnosis body therapy with massage trauma and stress education craniosacral therapy psychological group therapy with mindfulness body therapy with an emphasis on dance and body awareness therapy steps in the theory synthesis step 1 the bases of the theory are the lived experiences of women who have been victims of sexual violence in childhood adolescence andor adulthood and the effects this has had on them as described in seven of our own published studies 23 24 25 26 27 28 29 as well as their challenging journey towards internal healing these were used as the bases of the theory in this first step of the theory synthesis an overview of them can be found in table 2 as well as what the key factors were in the womens descriptions of the physical mental and social consequences of the sexual violence they experienced and what benefited them most in their search for internal healing we extracted key concepts and key statements from the studies and summarized all the factors that helped to answer the research questions step 2 after working from the evidence base that was created in the first step of the theory synthesis we examined the results of studies and academic writings that had formed a theoretical background in our own studies for more than a decade in the field of sexual violence and psychological trauma this was done to reach a common conclusion about the consequences of sexual violence for women and girls and what benefits them in the challenging journey of seeking internal healing following such trauma in this search we obtained confirmation of our findings in step 1 first and foremost we found that psychoneuroimmunology research results on the relationship between body mind and soul helped us better understand the consequences of sexual violence and womens challenging journey to seek treatment for their body mind and soul following such violence and the resulting toxic stress step 3 in this step the results are presented using the methods that are considered most suitable for the material we chose to present the theory in the text and in a figure results in the presentation of the results the theory is described in the text and within a figure the main concepts of the theory are defined in table 3 table 3 definition of the main concepts of the theory concepts definition a woman or a girl who is a victim of sexual violence a woman or a girl who has been sexually assaulted is an individual who is part of a family and a community the violence has made her more sensitive than usual to stress and she needs traumainformed healthcare and traumainformed therapy she is now more vulnerable to various forms of violence health health has many dimensions including physical mental emotional social and societal a womans health can be enhanced or weakened in various ways a womans subjective health consists of her conceptual understanding of her own strengths which enables her to achieve her most important goals regarding longterm happiness and wellbeing sexual violence has a significant negative impact on every dimension of health of the victim the environment a womans and a girls environment can be divided into two dimensions the inner which includes the womansgirls needs expectations past experiences and her own selfimage and the external which includes factors outside the woman and the girl that affect her her family friends and community sexual violence is a very destructive environmental factor that creates a toxic environment for the victim empowering a woman or a girl who has been sexually assaulted a womans and a girls subjective feelings about being empowered selfempowerment reduces a womans and a girls vulnerability in her situation increases her wellbeing gives her a stronger voice in her situation and a greater sense of control of her situation empowerment enables her to strengthen herself and cope better with the situation she is in in response to the first research question on the consequences of sexual violence for women and girls the main findings are that sexual violence causes an enormous psychological shock and results in toxic stress that triggers inflammatory processes that are the bases of many physical and mental illnesses the consequences are farreaching in childhood adolescence and adulthood the essence of the longterm consequences of sexual violence is persistent suffering consequences of sexual violence in childhood the consequences of sexual violence in childhood are emotional and existential pain and anguish for the survivors following the violence they are always vigilant always expecting something bad to happen and feel that their personal defenses have been broken down they struggle with selfblame broken selfimage and guilt leading to great secrecy intimidation fear and humiliation they also experience multifaceted physical and mental problems and always feel different after the violence they cannot sleep at night and struggle with multiple psychological problems such as attention deficit disorder or attention deficit hyperactivity disorder they experience deep internalized suffering and the disconnection of body and soul feel that their defenses have been broken down and experience great vulnerability as a result some use sugar as an anesthetic for their emotional and existential suffering and are fighting eating disorders and often obesity as a result their emotional pain is mostly directed inward causing persistent suffering in the form of inner anguish and despair consequences of sexual violence during adolescence following sexual violence in adolescence the young girls lives is difficult and characterized by bullying and distress a great deal of teasing few or no friends and resulting isolation they focus their emotions inwardly and are repressed usually having learning difficulties struggling with dyslexia and attention deficit most try to be invisible and live in constant fear most of them struggle with eating disorders especially obesity and some start using alcohol during adolescence to soothe their inner pain they have various physical problems eg myositis gastritis abdominal pain migraine headache and gastrointestinal problems at the same time they struggle with dizziness and feel faint most of them struggle with suicidal ideation and selfharming behavior and some attempt suicide in most cases their emotional and existential pain is directed inward causing persistent suffering inner anguish and despair consequences of sexual violence in adulthood the adult survivors struggle with health problems in the lower abdominal area such as severe and unexplained pain recurrent urinary tract infections ovarian inflammation irregular menstruation endometriosis chlamydia and ovarian cysts they also deal with miscarriage placental abruption and various other problems that often end in hysterectomy other complex and extensive physical health consequences and severe physical symptoms included widespread and chronic pain high blood pressure endocrine problems diabetes lymphatic problems abdominal pain cardiovascular problems indigestion neurological problems asthma fibromyalgia myositis chronic back pain and other musculoskeletal problems following the sexual violence they feel they have lost the joy of life and the will to live they experience high levels of stress fear anxiety fright sadness anger depression personality disorder posttraumatic stress disorder social phobia sadness depression and postpartum depression they all struggle with sleeping problems feel tired and lacking in energy and find it difficult to stand their own ground they experience heavy flashbacks difficult memories and nightmares loneliness rejection phobia and isolation they experience shame and guilt and feel dirty they try to numb their emotional and existential pain by using food alcohol or drugs they experience great unexplained discomfort a broken selfimage diminished selfesteem and selfregard and have little to no selfconfidence difficulty getting a job and many are on disability allowance the survivors also struggle with suicidal thoughts selfharming ideation and some attempt suicide following the sexual violence they find it difficult to trust and maintain normal relationships with others especially men they also have difficulties regarding touch sex and relationships with their spouses they experience exposure to all kinds of further violence including rape and repeated physical mental and sexual violence they all experience great anxiety stress and strain as mothers most of survivors often seek help from healthcare services for their various health problems and are usually not asked about experiences of violence they themselves rarely report their experience of violence and experience little support from healthcare professionals but a large amount of medication the psychoneuroimmunology research findings which entered the theory synthesis in step 2 explain that the severity of the consequences of sexual violence is due to the fact that when a woman or a girl experiences sexual violence she suffers a severe trauma and the more severe the violence is the more serious and profound the consequences are she is likely to freeze and not try to escape or fight which makes sense since the perpetrator is usually bigger and stronger than her her involuntary assessment is that she has a greater chance of surviving by freezing however this will have longterm mental and physical consequences her defenses have been broken down and her sense of selfcontrol is taken from her which makes her more vulnerable as a result and has very negative consequences the challenging journey in search of inner healing after sexual violence the women sought internal healing for their invisible psychological traumas in the aftermath of the sexual violence they often struggled with physical emotional mental and social problems and tried their best to soothe their severe existential pain by all available means in response to the significance of the metoo movement on the journey of women in the pursuit of internal healing it is important to first look at the results of a study on the wellness program designed to promote the inner healing of women who have experienced sexual violence it was a 10week program organized over 20 hours per week a group of healthcare professionals used a holistic approach and provided individual and group therapy based on the unity of body mind and soul the women found the most useful treatments to be group therapy where the emphasis was on disclosing the violence and receiving the support of other survivors as well as empowerment from supportive professionals they also felt that they benefited from deep relaxation and hypnosis body awareness therapy psychotherapy group therapy with mindfulness body therapy with an emphasis on dance and body therapy with massage as well as craniosacral therapy provided by a physiotherapist which is a mild form of treatment aimed at relieving tension in the connective tissue of the body the results in a nutshell the results in a nutshell are shown in figure 1 a woman or a girl who is sexually assaulted experiences a psychological trauma the reaction to such a trauma is to flee or fight but if that is not possible the body responds by freezing wherein the overwhelming emotions she experiences lead to freezing within her nervous system failure to work through these traumatic emotions may result in serious physical and psychological consequences after experiencing severe trauma she uses various ways to disconnect from her frozen emotions such dissociation can have physical and psychological consequences and can for example lead to her developing an addiction and selfdestructive behaviour during the trauma the womans boundaries are disregarded and broken down making her vulnerable to repeated violence and traumas as well as addiction to deal with these consequences a holistic approach is important emphasizing the unity of body mind and soul in this approach the emphasis is on disclosure of the trauma receiving social support being able to relax the stress in the nervous system and selfempowerment traumainformed services are important to prevent retraumatization such services can be implemented in all systems of society ie the school system the law enforcement system the healthcare system and the social welfare system and they include among other things educating staff about the frequency of trauma and the consequences for the survivor subsequently it is important to offer traumainformed treatment that is treatment offered by specialized therapists who work systematically with trauma survivors to assist them in working their way out of the consequences of the trauma treatment offered by specialized therapists who work systematically with trauma survivors to assist them in working their way out of the consequences of the trauma discussion sexual violence is a much more serious crime than most people realize a woman or a girl who is sexually assaulted whether in childhood adolescence or adulthood suffers from longterm physical mental and social consequences the most important results are the almost unbearable emotional pain that she usually hides inside herself and her consequent struggles with persistent suffering this section will address these longterm consequences of sexual violence the importance of disclosing the violence and the importance of social support for internal healing finally the significance of the metoo movement in this regard will be discussed what is undeniably striking in the results is how farreaching the negative consequences of sexual violence are why are these consequences so drastic and serious one of the main reasons for this is that human beings are not a collection of systems such as the immune system the endocrine system and the nervous system but one whole and psychological traumas affect all of these systems a woman or a girl who is sexually assaulted experiences overwhelming or toxic stress that affects the key systems that are part of her stress response then the question is why does stress have such serious consequences this is because there is no real difference between mind and body due to the constant communication between the brain the nervous system the endocrine glands and the immune system psychological trauma caused by sexual violence has longterm discussion sexual violence is a much more serious crime than most people realize a woman or a girl who is sexually assaulted whether in childhood adolescence or adulthood suffers from longterm physical mental and social consequences the most important results are the almost unbearable emotional pain that she usually hides inside herself and her consequent struggles with persistent suffering this section will address these longterm consequences of sexual violence the importance of disclosing the violence and the importance of social support for internal healing finally the significance of the metoo movement in this regard will be discussed what is undeniably striking in the results is how farreaching the negative consequences of sexual violence are why are these consequences so drastic and serious one of the main reasons for this is that human beings are not a collection of systems such as the immune system the endocrine system and the nervous system but one whole and psychological traumas affect all of these systems a woman or a girl who is sexually assaulted experiences overwhelming or toxic stress that affects the key systems that are part of her stress response then the question is why does stress have such serious consequences this is because there is no real difference between mind and body due to the constant communication between the brain the nervous system the endocrine glands and the immune system psychological trauma caused by sexual violence has longterm health consequences because such stressful experiences can adversely affect the immune response for the rest of the survivors life 30 31 32 this means that those who have such experiences are at a greater risk of developing serious diseases than those who have not had to endure such trauma they are more likely to have medically unexplained physical symptoms 33 and have a greater need for healthcare than those without such experiences 34 knowledge of the relationship between mind body and soul and the idea that trauma can cause significant physical and mental changes as research findings from psychoneuroimmunology show can provide a framework for examining the healing properties of some methods to promote health and wellbeing after sexual violence in the future this could enable healthcare professionals to take a closer look at what works for those who have experienced traumas such as sexual violence in 2013 a national policy group met in washington dc to review evidence related to the effects of trauma on health and to develop guidelines for healthcare professionals researchers and politicians on key aspects of responding effectively to recent and past traumas 35 the group was established due to numerous studies growing knowledge and experiences that have shown that people come to health services with common symptoms that can be traced back to traumas their goal was to promote traumainformed care and traumainformed treatment with the hope of increasing the chances of a cure for those who have been sexually assaulted such a group would need to be established in other countries to accelerate the development of traumainformed services it is also important to continue researching which treatments are best for girls and women who have been traumatized by sexual violence 36 it is interesting to note that the women in the wellness program felt that what was most helpful for them was when they had the opportunity to open up about the experience of sexual violence and this is exactly what the metoo movement has been all aboutdisclosure 37 research suggests that the reason why disclosing emotional trauma provides the power to heal seems to be related to the fact that inhibition suppressing emotional pain and distress requires work this work consists of physiological exertion that is significantly stressful like all other stressors it raises the levels of catecholamines and other stressors such as cortisol in the body which can contribute to immunosuppression in addition to damaging the arteries and increasing the risk of various diseases and illnesses relieving the suffering caused by violence can only come by disclosing the violence and thus reorganizing ones thoughts and feelings about the distress created by the violence 38 disclosing this inner distress and talking about the violence so that such a reorganization of thoughts and feelings can take place often requires a great deal of courage what happened in the metoo movement is that women saw that they were not alone in this persistent suffering more women had experienced the same horror the great solidarity and the powerful message that metoo sends to women you are not alone was what gave women who had been sexually assaulted the strength and courage to disclose the violence they had experienced and return the shame to the perpetrator various studies have been carried out that show the importance of disclosing trauma and not hiding it for example 50 healthy college students were asked to write about the psychological trauma they had suffered or a trivial matter for twenty minutes four days in a row participants who shared much of the traumas they had experienced subsequently showed higher and better mitogenic responses reduced hyperactivity of the autonomic nervous system used healthcare less and their stress was significantly reduced 39 in another study the participants consisted of 74 female university students with a history of sexual violence who wrote either about the sexual violence they had experienced or about how they spent their time during the day one month later there was a big change in those who had written about their experiences of sexual violence they felt very relieved and felt much better in their body mind and soul immediately after the writing 40 research has also shown that those who systematically disclose difficult thoughts and feelings related to the experience of sexual violence have fewer sick days and doctor visits than people who do not 38 meta analyses have been published on the importance of disclosing emotional traumas such as those caused by sexual violence which show that such disclosures promote physical health increase wellbeing and enhance the physiological functioning of the body 41 the metoo movement served as a powerful social support for many women who had been sexually assaulted and who had never reported the violence they experienced 142 social support strengthens the immune system and is one of the most important aspects of healing after sexual violence it is linked to a lower incidence of the negative consequences that usually result from distress and destruction in adults the individuals psychological characteristics and available social support change the effects of destructive events 43 social support acts as a buffer and directly protects people from the harmful effects of toxic stress and those who are active in seeking social support in the aftermath of trauma have an increased quality of life social support can therefore reduce the harmful effects of stressful events it promotes the health of those who experience it regardless of whether the individual has experienced a stressful event or not strong selfhelp and supportive social networks have a direct effect on the individuals response to stressful events and reduce the risk of illness following such events holtlunstad et al 44 conducted a metaanalysis of social relationships and mortality using 148 studies consisting of over 308000 participants their conclusion is that social support results in a 50 lower mortality rate from all causes and that the relationship between social relationships and deaths is comparable to standard risk factors such as smoking exercise and obesity interestingly it is the perception of the individual that matters most which means that experiencing social support through the metoo revolution may have done more for women who have experienced sexual violence than many would suspect it is important that health and social care workers are well informed about the consequences and prevalence of sexual violence in order to respond correctly to those who seek help especially when it comes to women who belong to vulnerable groups who traditionally experience prejudice such as those who deal with mental health problems or excessive alcohol consumption and it is important to focus on traumainformed services in this sense support is key 45 the metoo movement has created an opportunity for healthcare professionals to focus on traumainformed services for victims of sexual violence through education targeted action and better resources 46 professionals working with victims of violence have also felt the effects of the metoo movement visits of female victims of sexual crimes to emergency departments police stations child protection services and centers for victims of violence have increased women seem to seek help sooner than before and are more informed about the resources available in addition more women are confessing that they have experienced sexual violence in close relationships than before 47 however there have not yet been enough changes to benefit the victims of sexual violence there still seems to be great responsibility on the part of the victims and the burden of proof is still great there also remains a lack of research on how best to deal with such issues in the health and social care system it is therefore important to further strengthen the ways in which within the healthcare system changes can be made for the benefit of survivors and to provide traumainformed services wherever victims seek help 48 conclusions this article focuses on a theory that revolves around the farreaching physical mental and social consequences that sexual violence has on women and girls as well as their search for internal healing and how the metoo movement can have a positive effect on that search metoo has had a clear impact on the discussion surrounding sexual violence however it is important to further strengthen our education regarding the effects of sexual violence as well as research in this important area sexual violence is a major crime and emphasis must be placed on appropriate responses considering the need for evidence in favor of the victims it is important that health and social care professionals consider the fact that one in every three women experiences some form of sexual violence in their lifetime and that this violence causes persistent suffering for the woman and has a significant negative effect on her health and wellbeing it is also important that traumainformed services are offered wherever women seek health and social services and that each woman receives the support and treatment she needs to return to a state of improved health and wellbeing data availability statement only published papers were used in the theory synthesis funding this research received no external funding but was supported by the university of akureyri institutional review board statement not applicable informed consent statement informed consent was obtained from all subjects involved in the studies used for the theory synthesis

this paper uses the method of theory synthesis primarily from our own previous studies and psychoneuroimmunology research with the aim of exploring and better understanding the consequences of sexual violence for women and their search for inner healing the impact of the metoo movement is also examined the main finding is that sexual violence causes persistent suffering for women and girls in childhood and adolescence the main consequences include a feeling of unbearable secrecy threat and humiliation disconnection of body and soul great fear and constant insecurity damaged selfimage selfaccusation and guilt experiencing being compelled to take full responsibility for the crime as well as various physical and mental health problems eg suicidal thoughts in adulthood the consequences are also multifaceted and varied including vaginal problems recurrent urinary tract infections widespread and chronic pain sleeping problems chronic back problems and fibromyalgia eating disorders social anxiety severe depression and chronic fatigue in conclusion sexual violence has these extremely negative and longterm consequences because of the interconnectedness of body mind and soul the seriousness of the consequences makes a traumainformed approach to services essential to support the healing and improved health and wellbeing of survivors

background the stigma associated with human immunodeficiency virus is a significant global public health concern 1 hivrelated stigma has persisted despite acknowledgement of its negative impacts on peoples lives and society systematic reviews have highlighted attempts to reduce stigma and its impacts primarily through education skill building and support 2 3 4 although some stigma reduction strategies have demonstrated success the evidence is not robust and lived experiences confirm the persistence of stigma the ability of hivrelated stigma to continue to perpetuate prejudice and discrimination toward people living with hiv is exacerbated by the intersectionality of additional forms of stigma and discrimination created and maintained through colonial social and political structures racism sexism and homophobia 4 along with additional social structures and attitudes that place people at increased risk for hiv contribute to the intractability of the stigma experienced by people living with hiv greater investments in stigma reduction is required to achieve the world health organization 2030 targets to end the aids epidemic 5 research has been accumulating on the experiences of hivrelated stigma and its negative impacts on health and wellbeing 6 7 8 photovoice has been recognized as an important way for adults living with hiv to share their experiences of stigma 9 greater opportunities for adults living with hiv to share their stigma experiences while highlighting what is required to resist and disrupt stigma can provide guidance for system and structural change in this communitybased case study research we amplified the voices of people living with hiv through photovoice methodology to learn how participants experienced and built resistance to stigma we identified the actions that health and social services need to take to disrupt stigma and improve the health and wellbeing of people living with hiv the impact of stigma hiv stigma has been described in various ways the mechanisms by which stigma affects individuals have been conceptualized as functioning through enacted anticipated and internalized stigma 10 enacted stigma includes discriminatory behaviour toward people with a stigmatized health condition and encompasses all the ways people have experienced discrimination through violence exclusion blame and additional behaviors that place them at a disadvantage socially economically and in their pursuit of health and wellbeing 11 12 13 anticipated stigma refers to the extent to which people expect they will experience prejudice and discrimination from other people 1415 internalized stigma includes negative attitudes and feelings that someone with hiv may have that are directed toward themselves 1617 the extent to which people living with hiv experience stigma and how they react to stigma varies considerably however a body of research has demonstrated the profound negative effects of all three dimensions of stigma for example enacted stigma can increase the likelihood that people will experience violence 18 19 20 social rejection 20 and exclusion from rights and opportunities that contribute to lower rates of employment 21 housing insecurity 22 and unmet health and social care needs 2324 anticipated and internalized stigma can reduce treatment adherence 25 and increase peoples reluctance to disclose their hiv positive status creating barriers to obtaining social supports including health care 26 anticipated stigma has been negatively associated the willingness to seek life opportunities such as employment 27 internalized stigma has been associated with a lower likelihood of initiating antiretroviral therapy 28 more mental health concerns 29 and poorer overall selfreported health 6 the interactions of these dimensions of stigma are complex turan and colleagues 26 illustrated the ways that perceived community stigma can influence internalized and anticipated stigma and their effects on medical and social outcomes thus the dimensions of stigma influence each other in their scope expression and outcomes across a variety of contexts and life situations 30 in the context of hivrelated stigma and its variable effects on peoples lives we wanted to better understand how people with hiv live with stigma the purpose of this study was to explore a the ways that people with hiv experienced stigma and its emotional and social effects b how they strive toward wellbeing to resist and disrupt stigma and c the social and structural supports and resources that can promote living well with hiv methods design this study used an artsbased qualitative case study 31 research design using photovoice 32 and narrative interviews 33 photovoice methodology facilitates communication about everyday experiences and promotes critical discussion about those experiences to influence public policy 32 photovoice has been used as a communitybased research approach for diverse areas of concerns priorities and promotion of practice and policy change affecting people living with hiv 9 including examining the experiences of hivrelated stigma 3435 through photovoice participants take photos that become a catalyst for the narration of their stories during subsequent interviews in this way they take more control of the interview than traditional interview methods because they determine the pictures they take and the stories they tell related to the pictures the methodology also promotes inclusiveness through communication of experience in pictures as well as words case the research was bounded by a particular case that of adults living with hiv in manitoba canada although exact numbers of people living with hiv in the jurisdiction are difficult to determine mcclarty and colleagues reported that in the first quarter of 2019 there were 1357 clients of the manitoba hiv program the primary provider of hiv treatment care and support in the province 36 the largest proportion of clients were aged 40 to 64 years distribution of selfidentified ethnicity was reported as 362 white 399 indigenous and 191 subsahara africancaribbeanblack the client population was predominantly male at 647 however there have been greater proportions of females being diagnosed in recent years 37 selfreported potential risk exposure for both females and males newly diagnosed in the jurisdiction in 2020 was highest in people who inject drugs followed by heterosexual sex 37 the impact of the social determinants of health has been evident in for example the relationship between hiv and lower income in both urban and rural areas with a high prevalence of people who live with hiv being in the lowest income quintile 38 despite manitoba having the second highest rate of hiv infections among the canadian provinces and territories 39 there has been little research that has explored the ways that people living in the province have built resistance to their experiences of stigma recruitment we recruited participants through posters at a community health centre specializing in the care treatment and support of people living with hiv by contacting people who had participated in a previous study on hivrelated stigma and had agreed to be contacted for future research through existing networks and wordofmouth procedures we began the study in february 2020 with a small group of six potential participants who attended a group orientation session lasting approximately two hours in which members of the research team explained the purpose of the research confidentially collected demographic and background information related to age citizenship status ethnic and racial identity sex at birth gender sexual orientation and years since hiv diagnosis participants were provided with training on photovoice picture taking use of a camera ethics of picture taking and safety considerations participants were asked to take a minimum of five pictures and to journal the meaning of the photograph using a version of the showed technique described by shaffer and reported by catalani and minkler 40 journaling prompts were what is seen what is happening how does this relate to ourmy life why are things this way how could this image educate people and what can i do about it we asked participants to take pictures of their experiences of stigma and provided the following suggested topics what stigma is why stigma exists how to personally overcome stigma and how to reduce systemic stigma we gave participants great latitude on what topics they felt were most important to represent in their pictures and discuss in their followup interview although we had a general discussion about stigma in the photovoice training session we did not tie participants to a particular definition of stigma public health orders related to the covid19 pandemic that were implemented shortly after the first group session prevented further inperson research processes one participant from the initial group did not continue after the orientation session orientation sessions for an additional six participants and all subsequent followup interviews were done individually via virtual teleconferencing software in one case the individuals partner was in the background during sessions at the participants request followup interviews were conducted once a participant had gathered at least five pictures interviews were facilitated by the research coordinator with support from either a peer research assistant or principal investigator semistructured interviews were guided by a modified version of the showed framework as described above with prompts to relate the conversation specifically to stigma participants were also asked about key messages for people living with hiv service providers and policymakers the interviews were audiorecorded and transcribed verbatim analysis photos journals and interview transcripts were sources of data that were analysed using inductive thematic qualitative methods adapted from miles huberman and saldana 41 and following the traditions of braun and clarke 42 inductive thematic analysis has been employed in previous photovoice studies 43 it was chosen as the analytical approach because of its flexibility it also places emphasis on participants interpretations in this case as elicited through their photos journals and individual interviews rather than relying on the researchers theoretical perspective 42 in addition it is consistent with the researchers social justice approach demonstrated by forefronting the perspectives of participants as they spoke about the ways that stigma impacted their lives and their perspectives of remedies for social stigmatization two team members were involved in data analysis one team member began first cycle analysis by developing a basic coding structure through linebyline coding of the first interview transcript in the context of the photos and journal a second team member who became the primary data analyst read the transcript and reviewed the coding structure the two team members met to discuss the coding and interpretations next the primary analyst conducted first cycle analysis on all subsequent transcripts through linebyline coding using the initial coding structure and adding new codes as they were conceptualized from the data the two team members met on a regular basis during the coding process to discuss codes and interpretations the primary analyst noted salient points through memo writing 40 definitions of codes were refined and discrepancies in interpretations resolved through discussion next second cycle pattern analysis involved the primary analyst searching for and reviewing themes 42 by grouping first cycle codes into larger thematic categories these larger categories were refined and reorganized by the two team members with attention to identifying cross case confirming and disconfirming comparisons 41 themes and subthemes were defined and named 42 photos and journals were consulted iteratively during the process of describing the themes results eleven 11 participants completed the photovoice process table 1 summarizes their demographic and social background information all participants identified as cisgender in this manuscript we highlight the ways that participants strove for a good life in which they could experience wellbeing in the face of hivrelated stigma all participants shared the emotional pain and social rejection precipitated by hivrelated stigma yet they found new ways of living a life although stigma continued to create barriers to their wellbeing they shared stories of their inner strengths and resources as well as external factors that helped them along that journey we begin by describing the experiences of intersecting stigmas and the emotional and social impacts of stigma that participants chose to share to provide context for the factors that supported participants as they were striving toward wellbeing we then describe the four themes that emerged about the factors that supported wellbeing a caring for oneself b caring for children and pets c reconstituting social support networks and d resisting and disrupting stigma we end by summarizing the system and structural resources that participants identified as important to flourishing in the context of hiv stigma quotes are identified according to the participants gender woman or man and a code number experiences of intersecting stigmas although participants were asked about their experiences of hivrelated stigma for many these experiences could not be disengaged from the intersectionality of stigma associated with additional social identities stories of intersecting stigmas focused on racism sexism and homophobia racism was identified by several participants as having significant negative effects on their lives both prior to and after being diagnosed with hiv for example one participant spoke about the verbal abuse and social prefer not to answer 1 ethnic or racial group indigenous 4 white 3 black or african 3 asianwhite 1 marginalization experienced as a black person growing up in a predominately white community and how that prompted them to leave school and the community indigenous participants talked about being bullied and verbally abused another participant explained how being black and an immigrant to canada both intersected with hiv in their experience of stigma and discrimination sexism was described in the context of stigma and discrimination by two women participants who noted the challenges that women often faced they identified attitudes and behaviours focused on blaming women one participant noted that there is an idea that women ask for it you know that they ask to be in… abusive relationships… there is a perverse idea that they have to explain themselves you know otherwise they just must fit into a category it must be their fault another participant who was an immigrant to canada shared her perspective of how women in some cultures can be blamed in particular ways for anything that is perceived as wrong leading to abuse and being trapped in marriages with no way out another woman spoke about prevailing assumptions that people who are diagnosed with hiv must be either street workers or injection drug users these assumptions were connected to a blaming culture inside and outside health and social care systems that tied hiv infection to peoples personal behaviours rather than the structural systems that placed people at risk homophobia was also a source of discrimination participants who identified as gay talked about the ways that having hiv compounded negative attitudes from family and other social networks one participant said well you know for me it is my family that doesnt respect me … like my mother is embarrassed about me it was bad enough that i was gay but hiv was a complete no no she loved me anyways but she was embarrassed and it was shameful for her for this participant and another there was an overlay of religious belief systems that exacerbated negative attitudes toward both homosexuality and hiv one participant described this as the perception in some religious communities that hiv was punishment for being gay another participant noted the impact of colonization and the imposition of dominant western worldviews that consider sex a taboo subject resulting in barriers to education about hiv in some communities she noted western philosophy is that you get married and you dont deal with sexually transmitted infections because of colonization you dont talk about things … thats a very taboo subject the emotional and social impacts of stigma the system structural and social attitudes and behaviours toward people living with hiv had deep emotional impacts stigmatizing attitudes toward hiv often resulted in their own feelings of shame and selfstigma for many participants these feelings were most prominent immediately after diagnosis but could last for years interpersonal and structural oppressions from hiv and intersecting stigmas led to the experience of fear for many participants fear was most often related to worries about how a partner family or friends would react when they discovered the persons diagnosis in many cases people were fearful of violence and rejection for some enacted physical and emotional violence led to increased fear of additional and exacerbated violence related to disclosing an hiv diagnosis the fear of or previous experience with rejection tended to result in deep emotional pain for many participants although feelings of shame and internalized stigma dissipated over time the fear of rejection from sexual partners family friends and acquaintances often persisted participants responded to the fear of rejection in various ways such as avoiding intimate relationships in which they felt disclosure might be necessary some participants noted that fear of rejection prevented disclosure when there was a desire to talk more openly about hiv to family friends and acquaintances social isolation and pervasive feelings of loneliness was a prominent outcome of stigma stigma precipitated disruption in previous relationships participants talked about losing relationships once their friends or family found out they were hivpositive one participant said like nobody wont want to come close to me because what i have or visit me i lost a lot of friends because of it … i dont go around people anymore because they always bully me fear of rejection was often the impetus for long term isolation and loneliness several participants talked about their strategies for protecting themselves emotionally by isolating themselves hiding or building a wall striving toward wellbeing despite the many negative impacts of stigma on participants lives they all strove toward wellbeing in their own ways and were at various stages of having lives they considered to be good participants shared their perspectives about the factors that supported their journey toward wellbeing in the context of hiv and intersecting forms of stigma four themes related to these factors were conceptualized from the data a caring for oneself b caring for people and pets c reconstituting social supports and d resisting and disrupting stigma caring for oneself participants reported that being diagnosed with hiv was a disruption that caused personal distress and was difficult to endure those who mentioned this disruption also indicated that they needed time to personally deal with their diagnosis for one participant hiv was the biggest rock thrown at me in response to the diagnosis of hiv some participants stated that they dealt with the diagnosis through behaviours they later saw as selfdestructive for example one participant noted that there is devastation finding out that you are hiv positive and that it is common you hear people selfmedicating you know like whatever drugs or alcohol and especially the first year and it is usually the hardest year many participants spoke about the transition toward looking after themselves physically this was not always a smooth or direct path but evolved as they gained a greater understanding of how they could live well with hiv although some participants talked about taking care of their physical health though good nutrition and exercise adherence to a strict medication regime was challenging for many one participant who initially struggled with making hiv medications a part of her life referred to the picture of pills stating said i think of this picture a very powerful picture for people living with hiv you know because thats what you have to remember you gotta remember that every day you know… you gotta have that glass of water you gotta have those drugs… and uh its helping me in my life my life span participants talked about the importance of taking care of themselves emotionally overcoming the selfstigma that affected their selfesteem was central to improving their emotional wellbeing one participant described addressing the anger they felt when they were first diagnosed i am totally a different person then i was when i was first diagnosed i had a lot of anger issues about society religion my parents and my friends and with this stigma of hiv and through the years just working with the counsellor has really burst the bubble the venom that was inside me i learned to love myself and respect myself another participant echoed a common perspective of the importance of maintaining hope i will feel down if i lost hope with myself and about my future living with hiv… i dont want to lose that hope selfrespect and maintaining hope translated into acts of resistance for participants i guess the strength is to hold your head up high even during adversity … and never give in to peoples bigotry and stigma they have against you just hold your head up high another participant used the analogy of a snake to describe her approach to dealing with stigma the snake is a powerful creature and he is gods gift and thats how i feel about myself and about stigma yeah sure it burns and hurts for a little bit and then you get over it and you take everybodys words and opinions into consideration if your opinion is ignorant and if it demeans me in anyway i am not going to take that and carry that negativity with me i am going to dispose it just like that snake sheds its skin taking care of oneself emotionally and physically also had spiritual and cultural dimensions in which participants sought peace and grounding in particular environments for some spending time in nature and the natural environment was important one participant stated i find that nature brings me a lot of peace… i can breathe in the air i can just be in the moment… i find that so makes me feel relaxed another participant used a photo of a trapline to talk about her hope to live in the wilderness and teach her grandchildren about that way of life although she recognized that she needed to be close to an urban centre to access health services her wish to be connected to nature was a prominent theme in her story you wont hear vehicles going by and you will just hear the leaves dancing around and the water flowing that is how i would like to live i know that i have hiv but i would like to live in the wilderness with my grandchildren some participants found peace in spaces that they created for themselves one participant described a place in his home that he had created and the spiritual value it held for him it is a very peaceful place remembrance of people who have passed on family and friends that are still alive and momentums of people and my dogs that passed away… it is a place that i can be centre myself with my creator and creatoress i light the incense and i put the light on and i mediate a little bit taking care of oneself emotionally and spiritually including cultural aspects of healing were essential for one participant participation in a group that took part in sweat lodges shake tents drumming and singing was essential to her wellbeing she said we reach back down to our roots and our ancestry to heal with hiv caring for people and pets participants talked about the importance of caring for and about people and pets as vital to their own wellbeing several women participants identified the importance of children and mothering in their lives the knowledge that they could have children who would be hivnegative was life changing one participant remembered the hope she felt when she learned she could give birth to a baby who would be hivnegative i am going to love my baby to no end my baby is going to be born healthy my baby is going to be born hiv negative and they are going to grow up and they are going to have lives of their own another participant talked about her children being the source of her resilience some participants noted the mutual caring they experienced from pets particularly cats and dogs pets helped these participants feel less lonely and to enjoy the things that make them feel good like one participant who talked about going outside for a winter walknot alone but in company of her dog we go for walks… it makes me feel good because that is something that i really enjoy … and i am not alone and i dont have to stifle by having people around me sometimes you just need to be alone but not completely alone makes me feel good anyways another participant described her cat as being unquestionably supportive a cat doesnt care… doesnt care if youre sick… the cat will actually try and take care of you most of the time some participants also highlighted their responsibility to reduce risks to other people particularly sexual partners we have to be careful we have to … minimize the risk for other people and that includes me taking my fig 2 white snake medication if i didnt take my medication i would be a greater risk to society one participant used the analogy of driving a car and how the driver is responsible for the rest of the people in the vehicle in addition to reducing risks to people reciprocity of caring was identified as being very meaningful another participant said that people cannot live individually we have to support each other we have to care for each other no matter what… all human beings need to support each other or otherwise it is meaningless reconfiguring social networks participants experienced disrupted lost and missed opportunities for relationships due to stigma and needed to reconfigure some of their social networks in response of particular importance for many participants was connecting with a community of peers who helped relieve the emotional burden of stigma this ability to find connection could be lifeaffirming and life changing one participant noted the importance of meeting other people who are hiv positive knowing that i was not alone there are so many people who are dealing with the same thing i think that was probably what brought me out of it it just being able to talk with other people this peer support assisted her emotionally and gave her the strength to talk openly with her family about being hivpositive she viewed disclosure of her hivpositive status to her family as a major step in moving on with her life finding a network of support was core to many participants connection with others and to nurturing a positive sense of self participants described peer connections as comforting as instilling feelings of power and as providing role models who have prevailed over oppression and discrimination resisting and disrupting stigma participants resisted stigma in their own lives several participants worked diligently to disrupt stigma within their social circles and a few had become strong advocates for social change resisting stigma tended to be a personal journey as participants learned more about hiv and spent time with people who were accepting and nonjudgmental the oppressive social attitudes and structures that created and sustained stigma and the intersections across racism sexism and homophobia became more evident and lessened selfblame although often challenging some participants spoke about the ways they resisted the stigmas that were directed toward them personally this included educating people in their social circles such as family friends and acquaintances educating other people was sometimes in the context of the disclosure about their own hivpositive status with the goal of negotiating and preserving relationships at other times it was motivated by helping people feel more comfortable around them as described by a participant who educated women who were incarcerated about hiv another participant spoke about wanting to educate people in her community without disclosing her own status like with my friends i dont want to tell them about my stigma about my hiv but sometimes i try to share hiv information with them without telling them details about me a few participants became strong advocates for social change by speaking publicly about their own hiv experiences they became peer mentors and spoke in variety of forums such as workshops and conferences with the goal of disrupting hiv stigma resources and supports the journey toward wellness was not a smooth or direct path understanding and supportive partners families and friends were essential participants recognized the social and structural drivers of stigma and resource availability they also identified several structural and system fig 3 dog supports and resources that they believed were necessary to improve wellbeing of people living with hiv and disrupt stigmas these were themed as a financial housing and food security b health social and justice services that are traumainformed culturally safer and responsive and hiv evidenceinformed c antioppressive community spaces d timely factual and universal access to education about hiv e access to peer and professional supports related to strategies to address the social and emotional aspects of stigma and f training support and opportunities to engage in peer mentorship public education and antistigma advocacy for people living with hiv financial housing and food security several participants spoke about the importance of securing financial resources for housing and food security financial insecurity could predate an hiv diagnosis but the increased need for medications and a healthy diet along with gaps in their ability to work due to illness after an hiv diagnosis could exacerbate vulnerability for example one participant used the photo of a downtown bus shelter as a catalyst to talk about a time when he was hospitalized couldnt work and didnt have sufficient funds to pay for his rent or the insurance deductible for his medications he said thats what that image burned in my mind is i could have been sleeping in a bus shelter thank my lucky stars that i didnt end up totally homeless he went on to say that governments need to provide enough funding to prevent homelessness several additional participants reinforced the importance of social supports to the wellbeing of people living with hiv for example a woman who identified as an immigrant to canada noted the role of social supports in meeting the holistic needs of people living with hiv emotionally mentally physically and spiritually health social and justice services that are traumainformed culturally safer and responsive and hiv evidenceinformed several participants spoke about having negative experiences within health social and justice systems and how these experiences could increase the trauma of hiv stigma and discrimination at the time of diagnosis these experiences included not being allowed to have a friend with them when given the results of their hiv test or not being provided with important information experiences also included questions from health and social care providers that the participant felt were stigmatizing one participant talked about health promotion materials in the waiting room that they felt depicted people with hiv as being from particular racial and ethnic groups in several cases participants felt that health and social care workers were illinformed about current evidence related to hiv and that more needed to be done to ensure they were welleducated antioppressive community spaces participants stories about their experiences of racism sexism homophobia and hivrelated stigma frequently occurred in schools churches health and social care institutions and other community spaces the need for strategies to reduce and eliminate oppression in these spaces was a desire of several participants timely factual and universal access to education about hiv like the need for education for workers in health and social service systems participants talked about the need for more universal access to hivrelated education this was expressed variously as doing workshops and sessions in locations such as schools to increase the publics education about hiv and stigma reduction participant w03 noted we need to address stigma at many levels there is a stigma in the healthcare system there is stigma in the general population there is stigma in employers like how do we address that more education having that conversation several participants shared the view that conversations about hiv were needed to ensure that the most uptodate information about hiv was available to people living with hiv as well as the public examples of ways that participants felt this universal educational approach would be beneficial included reducing internalized stigma and grief when people are first diagnosed and increasing employers understanding of hiv to facilitate employment opportunities and retention for people living with hiv access to peer and professional supports related to strategies to address the social and emotional aspects of stigma several participants spoke about the importance of peer supports one participant described the positive difference that finding peer support in a health clinic made to her in talking about peers that she met at the clinic she said you really just need to be given an hiv mentor when you are first diagnosed… you need someone that lives with it hiv only they can explain what its going to be like for the rest of your life a doctor cant tell you what it is like for the rest of your life but getting to talk to people who live with it and knowing their experiences and how they dealt with it and how theyre doing now i really could have used that when i first got diagnosed i really could have used that family in the beginning i am so grateful that i found them when i needed them this quote represented the idea that multiple types of supports were needed that emphasized different perspectives important medical needs could be addressed by a doctor while participants also found peer support and professional counselling valuable in addressing social and emotional needs including resisting stigma training support and opportunities to engage in peer mentorship public education and antistigma advocacy for people living with hiv a few participants spoke about their experiences being mentors educators and advocates one participant spoke about the importance of these experiences and the need for more opportunities i have come so far since my first diagnosis 10 years ago to where i am i am now going to national conferences and speaking to the media to being a support system for other indigenous women or anyone in general with hiv one of my big concerns is that i would like to see in future… a peer mentorship program where… i can speak to someone… especially newly diagnosed to normalize it and to actually let them know somebody cares although this participant had found opportunities for peer mentorship education and advocacy she also believed that more were needed these opportunities needed to come with dedicated funding to support activities like a formal peer mentorship program discussion photovoice methodology created an environment in which participants had control over what they chose to talk about when discussing hivrelated stigma by choosing photos as a catalyst for their conversations about stigma all stories were unique yet several themes were evident across multiple stories all participants talked about the many ways that stigma was deeply embedded with a diagnosis of hiv and had affected them emotionally and socially stigma was an added burden compounding the distress of coming to terms with and adjusting their everyday activities to living with a chronic and potentially lifethreatening health condition participants highlighted the impact of shame and internalized stigma associated with hiv on their social and emotional wellbeing the challenge of internalized stigma has been identified in previous research and is prominent for people living with hiv 44 internalized stigma has been recognized as originating from the social and structural drivers of stigma pervading society 45 and has been shown to have complex relationships with anticipated stigma 46 and perceived community stigma 26 for several participants overcoming internalized stigma was pivotal to living well with hiv emlet et al 47 found in their sample of people with hiv 50 years and older that older age was associated with less internalized stigma suggesting that it may be an important aspect of peoples long term stigma management strategies on the other hand the negative associations between stigma and wellbeing can be stronger for older adults perhaps because of the added effects of ageism 48 for participants in the current study enacted and anticipated stigma contributed to fear of rejection and in some cases violence enacted stigma was experienced by participants in a variety of ways both interpersonally and structurally examples included women participants who experienced new or increased intimate partner violence related to their hiv status and gay men who experienced community violence participants also experienced rejection from family and friends or anticipated that they would a finding consistent with participants in reinius et al s 49 study these experiences of enacted and anticipated stigma prompted some participants to leave relationships or avoid situations in which additional rejection or violence related to hiv stigma was anticipated these avoidance experiences could be a highly adaptive response to cope with extremely difficult situations 7 however this response can also result in the loss of important opportunities for life affirming social support networks for participants in the current study internalized enacted and anticipated hiv stigma intersected with additional stigmas in complex ways to contribute to disrupted lost and missed opportunities for relationships and social support networks loneliness was a common outcome and previous research has suggested a complex relationship among hiv stigma loneliness and depression 50 and reduced social support 7 rejection social isolation and the loss of social supports can have negative effects on peoples health 26 and has been shown to be a barrier to hiv treatment and care 51 including adherence to antiretroviral treatment 25 intersectionality of hivrelated stigma with additional stigmas was a prominent theme in the current study building on the work of crenshaw 52 logie and colleagues described intersectional stigma as the interdependent and mutually constitutive relationship between social identities and structural inequities participants in the current study spoke about hivrelated stigma at the intersections of additional forms of oppression consistent with previous research intersectionality was experienced related to race 22 53 54 55 sex and gender 5354 and sexuality 55 these additional oppressions were often experienced prior to an hiv diagnosis and many participants perceived that being diagnosed with hiv compounded their experiences of oppression earnshaw and colleagues 56 found that internalized stigmas related to race and sexual orientation before hiv diagnosis were associated with greater hivrelated internalized stigma after diagnosis this suggests both the independent and compounding effects of intersecting stigmas the implication is that to improve the wellbeing of people living with hiv the social systems and structures that perpetuate stigmas of all forms need to be addressed at their common root causes including coloniality intersectionality is an important consideration in studies on hiv stigma and we support calls for additional attention to this research 5758 ongoing antiracism interventions and the development of culturally safer spaces must consider intersecting identities participants talked about the ways they adapted to a life with hiv in the context of pervasive social stigma caring for themselves was a way of addressing the physical mental health and spiritual challenges of living with a stigmatized chronic health condition good nutrition exercise and medication adherence were important to maintaining physical health looking after their own emotional and spiritual health were important as well maintaining hope and working to increase selfrespect in the context of internalized stigma were important parts of this journey finding places that could help them find peace were often but not always in nature for some as previously identified by indigenous scholars culturallybased healing practices were instrumental to promoting wellbeing attention to culture and spirituality has long been neglected in western eurocentric health care and our findings suggest that this needs to change respectful collaboration with communities is essential for example collaboration with communities in the design and implementation of hivrelated health care is important in providing relevant health education and care targeted to african caribbean and black people 60 community involvement and leadership can increase access of indigenous people to culturally responsive health programs such as landbased healing 61 having a person or an animal to care for and about was an important part of some participants lives not surprisingly caring for children emerged has having special significance in addition caring for pets and having the companionship of pets was perceived as being important to emotional wellbeing previous research has also highlighted the positive effects of pet ownership for people with hiv 62 63 64 pets can provide comfort a sense of purpose and a buffer against stress and loneliness health and social care providers should be aware of the potential benefit for some people living with hiv reconstituting social networks was an important process for many participants in their journey toward greater wellness there was particular emphasis on connecting with people who were also living with hiv participants in the present study discussed the importance of peer support often in the context of a support group they identified the value of peers in providing information that helped them to live with hiv and supporting their positive life choices such as negotiating disclosure decisions with friends and family a recent systematic review of randomized controlled trials found evidence for the positive effects of peer support in clinical care cascade outcomes particularly retention in care medication adherence and viral suppression 65 there was inconclusive yet promising evidence for positive effects on mental health outcomes the current qualitative study points to the importance of peer support for emotional and in some cases spiritual wellbeing resisting and disrupting stigma in their own lives and in the wider population were important processes for participants in the current study they identified structural and social supports that can promote stigma reduction and increase opportunities to flourish we agree with nyblade et al 5 that to end the aids epidemic stigma reduction needs to be the highest priority participants in the present study provided guideposts for action some of these actions will be relatively easy to implement while others are considerably more difficult and will require concerted system and policy contributions access to peer and professional support to address the personal and emotional effects of hiv and associated stigma must be a priority programs of research focused on treatment are important yet reducing stigma and the emotional impacts of stigma continues to be neglected as a source of wellbeing and a pathway to adherence to medical interventions newly diagnosed individuals need access to supports that buffer the effects of stigma participants in the current study emphasized the importance of peers with whom they strongly identified andor for whom there was a sustained connection such as in an ongoing support group or relationship associated with implementation of peer supports is the development of training support and opportunities for people living with hiv to become peer mentors public educators and antistigma advocates timely factual and universally accessible public education about hiv needs to be a priority these interventions can be implemented relatively easily once they are considered essential to wholistic care participants noted the oppressions they experienced in various organizations and in public and private spaces promoting antioppressive community organizations and spaces is essential this finding draws attention to the antioppression role of religious cultural recreational educational employment and additional public and private organizations and environments where people meet gather and contribute to the social fabric of society importantly health social and justice services need to become universally traumainformed 66 culturally safer 6768 and hiv evidenceinformed to resist and disrupt all forms and intersections of stigma discrimination and oppression addressing the root structural sociopolitical drivers that limit peoples ability to flourish while living with hiv will have a great impact directly related to hiv stigma participants highlighted the essential need for people to have financial housing and food security to resist stigma and live a good life these largely neglected structural and system interventions require resources and commitments that recognize their essential contribution to people flourishing while living with hiv limitations and strengths as a case study this research may be limited in its application to other contexts and jurisdictions the small sample size meant that we did not have perspectives of people with a full range of gender racial and ethnic identities recruitment efforts were hampered by covid19 pandemic lockdowns although sample sizes in photovoice studies vary considerably our sample of 11 participants was slightly above the 6 to 10 range recommended by wang burris 32 photovoice methodology was limited by the need to collect data individually due to covid19 pandemic lockdowns reducing opportunities for collective discovery and action planning among the participants as a group however photovoice methodology gave participants the tools to choose what they as individuals felt was important in telling their stories of stigma and how they built resistance to stigma over time despite variations of experiences and responses there were patterns that suggest important actions that can reduce stigma and its impacts on people living with hiv participants highlighted intersections of hiv stigma with stigmas related to race sex and gender and sexual orientation other research has identified intersections with additional social identities and inequities including substance use 69 poverty 70 shelter insecurity 22 illness 55 disability 71 and roles and expectations 55 although these additional stigmas may have been experienced by and affected participants the nature of the photovoice methodology meant that participants identified the stigmas and intersections that they themselves prioritized in the interviews these priorities may have been influenced by the location and timeframe of the interviews the characteristics of the participants and the significance of the particular stigma to the participant intravenous drug use is a risk factor for hiv transmission in the jurisdiction in which this study took place yet none of the participants spoke specifically about experiences of intravenous drug use or its associated stigmatization at the intersection of hiv however the clear message from participants in this study is that it is important for practitioners policy makers and researchers to consider the intersectionality of stigmas whatever their source in all of their work conclusion participants experiences of their journeys toward living well within the context of hivrelated stigma were unique and an ongoing process however the results of this research suggest important patterns hivrelated stigma is pervasive and intersects with additional stigmas to compound the ways that stigma is experienced in enacted anticipated and internalized dimensions these experiences profoundly affect health and social outcomes for people living with hiv and society the transitions from internalizing to resisting stigma can be expedited by peoples personal assets and supported by health and social service system resources that extend beyond medical care to address basic needs for food shelter income and positive social and community connections to achieve goals of people living well with hiv and ending the aids epidemic increased health care social and policy attention needs to be paid to reducing the foundational system and structural drivers of hiv and intersecting stigmas authors contributions gr and mp conceptualized the study gr and eh wrote the main manuscript text pm provided photovoice training with grs support pu pm and gr conducted interviews eh gr and pm did the majority of the data analysis with input from pu all authors reviewed the final manuscript funding canadian institutes of health research frn hre97105 competing interests the authors declare no competing interests • fast convenient online submission • thorough peer review by experienced researchers in your field • rapid publication on acceptance • support for research data including large and complex data types • gold open access which fosters wider collaboration and increased citations maximum visibility for your research over 100m website views per year

background the stigma associated with human immunodeficiency virus hiv is a significant global public health concern health care providers and policy makers continue to struggle with understanding and implementing strategies to reduce hivrelated stigma in particular contexts and at the intersections of additional oppressions perspectives and direction from people living with hiv are imperativein this project we amplified the voices of people living with hiv about their experiences of hivrelated stigma in manitoba canada we used an artsbased qualitative case study research design using photovoice and narrative interviews adults living with hiv participated by taking pictures that represented their stigma experiences the photos were a catalyst for conversations about hiv and stigma during followup individual narrative interviews journaling provided opportunities for participants to reflect on their experiences of and resistance to stigma interviews were audio recorded and transcribed photos journals and transcribed interviews were analyzed using inductive qualitative methodsthrough pictures and dialogue participants n 11 64 women expressed the emotional and social impacts of stigmas that were created and supported by oppressive structures and interpersonal attitudes and behaviours these experiences were compounded by intersecting forms of oppression including racism sexism and homophobia participants also relayed stories of their personal strategies and transitions toward confronting stigma strategies were themed as caring for oneself caring for children and pets reconstituting social support networks and resisting and disrupting stigma participants made important recommendations for system and policy change conclusions these stories of oppression and resistance can inspire action to reduce hivrelated stigma people living with hiv can consider the strategies to confront stigma that were shared in these stories health care providers and policy makers can take concerted actions to support peoples transitions to resisting stigmas they can facilitate supportive and antioppressive health and social service systems that address medical care as well as basic needs for food shelter income and positive social and community connections

introduction placebased stigma and health inequalities much has been made about the ways in which physical and social characteristics of places shape health and wellbeing however the case has been made that the symbolic dimensions of places should also be considered important to health including the consequences of living in a neighbourhood that is stigmatised although this topic is relatively underresearched compared to other social determinants researchers have draw attention to the relevance of placebased stigma for addressing health inequalities living in a stigmatised neighbourhood has been found to have a negative impact on residents selfreported health and on reports of depressive symptoms and mental illness diagnosis in other studies placebased stigma has been associated with physical health outcomes including poorer sleep quality and hypertension lois wacquants thesis of territorial stigma has increasingly been utilised as a framework to research and understand how residents living in neighbourhoods that are vilified in public policy and media discourses manage this stigma in their daily lives initially wacquants work emphasised the ways in which residents may submit to the stigma this may include internalising the stigma retreating from other residents or physical spaces within a neighbourhood blaming others for the areas poor reputation or wanting to exit the area more recently wacquant has updated this original thesis with his framework also acknowledging the ways in which residents may reject or resist labels of stigma as well these various coping strategies are evident in qualitative studies of residents experiences of living in stigmatised places researchers have observed strategies of submission with distancing from others as well as othering often cited in a study in the north east of england for example distancing from neighbours and physical environments as well as blaming others for the areas poor image was a means of avoiding further stigmatisation earlier research in north west england also showed that residents decisions to distance themselves from those they perceived as improper people in their neighbourhoods was a strategy used to construct positive identities in the context of living somewhere stigmatised in contrast other studies point to the ways in which residents may also reject the label of the stigma or adopt indifference to the areas defamation as well as defend their neighbourhood similarly slater and anderson found that residents rather than internalising stigma articulated a strong sense of collective pride in where they lived intervening to address placebased stigma area based initiatives have a long policy history in efforts to address socioeconomic deprivation typically involving a range of measures to improve physical social and economic outcomes within a specific locality while such initiatives are in theory a means through which placebased stigma may be addressedby improving the social determinants of health in disadvantaged neighbourhoods as we outline below there is also the possibility that such programmes could exacerbate stigma as well firstly where particular localities are repeatedly targeted abis could contribute to stigmatising these areas and their residents this is because the process of ranking neighbourhoods as deprived and targeting them for intervention is arguably a stigmatising label secondly abis aspiring to transformational regeneration and gentrification could also exacerbate stigma attached to existing residents but in turn placebased stigma may also serve the policy justification for demolishing an area in the first place yet a further challenge is that the nature of abis are in themselves complex with multiple pathways to impact and potential for a range of outcomes in theory this may mean that an abi is successful in achieving positive impacts in some domains in spite of the stigma yet the presence of stigma may serve to dampen positive effects for example residents then experiencing postcode stigma by potential employers as outlined earlier studies have also now demonstrated an association linking spatial stigma to health this means placebased stigma may have a direct impact on health of individuals and local populations as well as being mediated through other pathways despite this only a small number of studies have evaluated whether abis influence the portrayals of areas either positively or negatively evaluations of the new deal communities programme demonstrated some success in improving how residents perceived their neighbourhood as a place to live positive improvements were more likely to be reported in neighbourhoods where local regeneration approaches focused on visible physical improvements and actively involved the community compared to approaches favouring major neighbourhood redevelopment where residents had limited control over regeneration plans other intervention studies measuring area reputation have produced mixed results and have also not set out to compare the relative impact of addressing stigma against other social determinants the sharp study in scotland found that rehoused social housing tenants reported improvements to their areas reputation one year after relocating to a new home in the neighbourhood an evaluation of a major multisite regeneration programme in glasgow found evidence that over time residents of areas undergoing regeneration became more likely to have a positive view of their own neighbourhood but also became more likely to think that their neighbourhood had a poor reputation among people who did not live there media coverage of socioeconomically disadvantaged neighbourhoods while a range of actors may play a role media coverage often emerges as a significant transmitter of poor reputation for socioeconomically disadvantaged areas journalistic practices that exacerbate stigma include reliance on a limited range of external sources such as local politicians and officials whose opinions about an area may be more negative than residents and the selection and prioritization of negative stories for commercial interests the accumulation of dominant negative area narratives may also lead to journalists uncritically reporting negative stories about a neighbourhood with crime featuring overwhelmingly in this coverage exacerbating these processes has been the limited opportunity that residents have had to challenge media representations within the literature only a few examples are documented of efforts by residents to challenge placebased stigma perpetuated by news reporting one substantive example is a major regeneration programme in dublin involving residents engaging with media providers to achieve positive change in how newspapers and a local radio station framed their residential estate central to this success the authors suggest was an investment in media capacity building for residents and the presence of community activists engaged in the estates regeneration developments participatory action research approaches while not directly targeting media coverage have also sought to give voice to residents narratives of their neighbourhoods as a means of countering negative external discourses in the public domain drawing on qualitative findings from an evaluation of an abi in englandthe big local programme we report on a comparative review of local newspaper reporting about two neighbourhoods funded by the programme we firstly report on the nature and volume of news coverage that both areas received we then examine whether big local through its focus on resident led decision making was influencing how the areas and communities living there were portrayed during big locals early delivery phase the potential for the programme to exacerbate stigma through its targeting of neighbourhoods for funding is also considered the implications of the findings for public health policy and practice are then discussed highlighting the need for strategies to consider placebased stigma more explicitly as part of local efforts to reduce health inequalities study design and methods background to study big local is a neighbourhood programme funded by the national lottery community fund and managed by local trust under the programme 150 english areas with populations that average 7500 people have each been allocated around £1 million the funding was allocated on the premise that it could be spent over a ten to fifteen year period at the communitys own pace the funding for these localities was announced between 2010 and 2012 all big local areas are relatively disadvantaged and were allocated funding on the premise that they had historically missed out on their fair share of lottery funding the programme is also underpinned by an ethos of assetrich communities making their own decisions on what is best for their area in order to draw down the funding residents were required to organise themselves details of the ongoing cic study and its findings to date are reported elsewhere ethics approval for the study was obtained from lancaster university faculty of health and medicine research ethics committee study sites based on analysis of fieldwork interviews and a review of big local partnerships delivery plans placebased stigma was observed as an issue for one third of the 15 fieldwork sites involved in the cic qualitative fieldwork with the media cited as one of the key actors shaping how areas were portrayed two of these areas were then selected for the media review based on their geographical location and because the big local partnerships were taking different approaches to address placebased stigma located in north west england the first area is in a coastal town and has a population of around 5550 based on a weighted average of lower super output area index of multiple deprivation 2015 scores we estimate this big local area had an average imd 2015 score of 6196 this score would make the area comparable to lsoas ranked within the second most deprived decile in england the majority of the population selfidentify as being from white ethnic groups there are a large number of victorian houses in the area that at one time served as boarding houses or hotels many are divided into privately rented apartments frequently of poor quality and some streets have several houses lying derelict local residents interviewed described a significant stigma attached to the area with the perceived notoriety of the area also reaching national coverage in the media due to a greater focus on tackling reputational issues we have named this area higherfocus area the second area is located in the london region we estimate this big local area had an average imd 2015 score of 3311 which is comparable to areas ranked within the third most deprived decile in england it has a larger population of 10810 and 72 of the population selfidentify as from white ethnic groups although the area has good links into the capital it was not at the time a major commuter town with many residents working andor conducting their daily lives very locally in this area resident perceptions locally were mixed with many praising the area for its community spirit and village like feel reducing the fear of crime among local residents however was highlighted as a significant issue and a negative external perception of the area was referred to frequently in fieldwork interview participants described a pervasive external perception of the area as rough and crime filled with significant social problems we have named this area lowerfocus area because compared to the higherfocus area the big local partnership placed less direct emphasis on addressing reputational issues we undertook a comparison of the big local implementation plan for each site to understand their approach to addressing reputational issues firstly this comparison draws attention to divergence in the visibility given to area reputation in the plans in the lowerfocus area no explicit reference is made to reputational issues although concerns about community perceptions of crime are cited reference is also made to a perceived neglect of the area by the council while the plan itself does not directly refer to area reputation our fieldwork interviews as part of the wider study explored this issue in more depth as highlighted above residents and workers suggested that from the outside the area had gained a reputation of being a high crime area as well as a dumping ground for troubled families in contrast in the higherfocus areas plan several references are made to a poor reputation with improving its image cited as one of the priorities for action here addressing reputational issues are perceived to be important not only because of the impact of stigma within the community by improving the reputation of the area it is also thought to amplify the success of the big local programme as well secondly table 1 draws attention to features of the local approaches in the two areas including a comparison of communicationspublicity structures press activities other big local funded activities in the plans with potential to improve area reputation additionally the active monitoring of press coverage is also arguably an indicator of the greater emphasis that this site placed on tackling the areas negative image in the press at the time of the research the big local partnership had also funded plans for a series of community festivals and creative art projects and invested in neighbourhood improvements table 1 comparison of implementation plans in two areas these activities aimed to help project a more positive image of the locality which in turn was intended to strengthen the impact of big local projects in the area foster a sense of pride attract visitors as well as support the local economy in contrast the lowerfocus area placed less focus on publicity activities beyond communication with residents living in the area here emphasis was placed upon improving perceptions through neighbourhood improvements and addressing the fear of crime these activities were undertaken alongside regular community events to bring residents together build community pride and keep children and young people occupied newspapers and search strategy news stories from four local newspapers with a print and online presence were sampled newspaper a and b in the higherfocus area are daily newspapers with print copies published five days per week figure 1 flowchart of search results data analysis table 2 below sets out the coding framework used to guide the overall review process which drew on previous studies investigating newspaper reporting figure 1 above shows the results of the search and screening process after removing irrelevant items articles were firstly screened to identify whether they featured the area or residents living there in a prominent or partial way at this stage further articles were removed if they were not relevant on full screening or if the geographical location being described was unclear as a result a large number of articles were removed for the higherfocus area this primarily arose from a lack of sensitivity in the searches one search term in particular generated a large number of articles where it search results articles included in review search results higher volume of coverage balance of coverage was unclear if the story was specifically about the area furthermore the area also shared a place name with another wellknown locality elsewhere generating many irrelevant hits all prominent articles for both areas were then categorised according to whether articles were positive negative mixed or neutral in tone the prominent articles were also coded according to the nature of their coverage using categories identified by kearns et al and devereux et al due to capacity and time articles categorised as partial coverage were excluded from the analysis double coding a negotiated agreement approach was adopted to double coding of a subsample of stories for the volume and balance categories in our coding schema this was undertaken by eh cs mc and rp and also involved 4 residents living in the higherfocus area the purpose of the doublecoding activity was to check the discriminant capability of our coding framework doublecoding also helped explore the assumptions that underpinned how the research team were categorising news articles and develop an elaborated understanding of category boundaries all members of the research team were involved in a series of discussions about coding decisions which were designed to help us achieve consensus about assigning articles to categories and to develop a shared understanding of the categorisation process public involvement residents of the two areas operated as public representatives supporting the media review at different stages they advised on the development of the search strategy and enhanced researchers understanding about how placebased stigma had a bearing on big local areas four residents living in one of the fieldwork sites also double coded a subsample of articles the residents coding of the articles was broadly in line with our coding but one or two interesting differences were raised informing discussions about category boundaries for example one article which researchers initially categorised as negative reported on community frustrations with a regeneration programme due to ongoing delays with its delivery however residents perspectives on the article suggested this was mixed because the regeneration itself was symbolically viewed as a positive development despite the delays encountered this involvement activity enabled decisions made about categorising articles to be more accurately rooted in lived experiences findings volume of coverage overall the higherfocus area generated a much higher volume of coverage compared to the lowerfocus area over double the number of articles categorised as prominent or partial coverage were identified for the higherfocus area compared to the lowerfocus area table 3 volume of prominent and partial coverage by area and newspaper higherfocus area lowerfocus area newspaper in the higherfocus area there also was a largely upward trend between 20122016 in the number of articles published in which the area or its residents were featured in the lowerfocus area the volume of coverage was on average lower in each year and appeared to show a slight downward trend over time some caution is needed in interpreting this result one possible factor influencing differences in the overall volume of coverage between the areas is that newspaper d in the lowerfocus area was a weekly publication whereas both publications in the higherfocus area were daily additionally interrogation of the results found no articles about the lowerfocus area being returned in the search results for newspaper d for the years 2015 and 2016 this decline in coverage appears to coincide with a merger of three regional newspapers one likely explanation is that the merger of these local newspapers vastly increased the new newspapers geographical footprint which may have reduced the likelihood of the area receiving coverage in the weekly press yet why the locality received no coverage at all in this newspaper after 2014 remains unclear even without these limitations the overall coverage nevertheless suggests a marked difference in the overall volume of coverage between the two areas figure 2 a comparison of prominent articles by areas between 2012 and 2016 portrayals of areas all prominent articles from both areas were coded for their balance of coverage in both areas negative coverage accounted for the largest category of coverage but table 5 shows some differences in the balance of coverage between the newspapers while newspapers a and b were broadly similar in in both areas positive stories were linked with coverage of community activities the work of community organisations and groups as well as features on residents eg a lottery windfall coverage of local activities featured frequently in positive coverage for both areas but more so in the higherfocus area here the positive coverage focused in particular on community festivals and events organised by a community arts organisation located in the neighbourhood crime and antisocial behaviour was overwhelmingly associated with negative portrayals in both areas similar to kearns et al reporting in some instances was linked to clustering around particular incidents in the higherfocus area for example a peak in crime reporting occurred when both newspapers ran a number of articles over several months about a spate of vandalism incidents this coverage also shaped how residents in the area were portrayed with several articles using descriptors of young people as running riot or in roving gangs coverage generated by big local the research team theorised that big local could influence the portrayals of the areas and residents in local newspaper reporting through two pathways firstly the targeting of the areas for big local funding and subsequent reporting of the initiatives presence would generate attention to the areas which could be positive or negative secondly the resident led ethos of the big local programme offered the potential for groups of residents linked to big local to articulate more positive narratives about their areas within reporting each of these pathways are considered in turn volume and balance of coverage of big local figure 4 volume of big local articles by area over time next table 6 shows the coverage of big local stories by the balance of coverage table 6 volume by balance of big local coverage higherfocus area lowerfocus area on the few occasions when local residents unconnected to big local were quoted this tended to reflect a more negative view of the areas this was particularly the case where people were quoted in correspondence to the newspapers around the time of the funding announcement the area is a hotspot for crime and antisocial behaviour i know because i live there we see that the creation of jobs locally will have a beneficial effect on the economy of community and voluntary organisations within the area when quoted also acted as champions for the resident led ethos of the programme in the quote below the representative emphasises the importance of local people having a greater say in neighbourhood decision making name of the voluntary service said its very important that people in the area decide how the money will be spent because it will be local people who will benefit discussion similar to other studies this review confirmed that local newspaper coverage contributed to the circulation of negative area portrayals which were observed in our neighbourhood fieldwork our findings add to these existing studies providing new evidence on how an areabased programme with a strong participatory ethos of involving residents in decision making positively influenced local media coverage in the higherfocus area that explicitly sought to challenge negative portrayals residents involved with big local aspired to regenerate a vibrant identity for the area and actively promote good news stories here a greater number of articles were generated through big local related activity compared with the area adopting a less intentional strategy in the lowerfocus area most articles about big local were clustered in the launch stage that the presence of the initiative alone was not sufficient to sustain this coverage over time where stories related to big local generated more mixed coverage this coverage focused on the socioeconomic challenges faced by both areas this coverage occurred primarily at the launch stage of the initiative highlighting the importance of framing rationales for targeting areas for funding using structural rather than pathologising language in the higherfocus area it is plausible that the combination of direct activities by the big local partnership with a wider programme of work designed to attract visibility and incomers to the area was achieving some success in generating more positive coverage within newspaper coverage yet this is not to say that the strategy adopted by the big local partnership in the lowerfocus area was unsuccessful in addressing reputational issues rather changes in perceptions may need to be measured in other ways beyond the media such as understanding shifts in the attitudes of public sector professionals or residents of other neighbourhoods towards the area it is also feasible that other major developments taking place in the areas were competing for press attention and might have influenced the amount of coverage which big local received in the lowerfocus area at the time of the research plans had been put forward by the council to progress a largescale housing redevelopment our analysis of the newspaper coverage indicates this redevelopment did not dominate overall coverage of the area nevertheless the reporting of the redevelopment was considerably higher than reporting of the big local initiative in this respect it is plausible that this development may have diverted press interest away from big local activities in the higherfocus area while a number of articles similarly dealt with nonbig local regeneration projects these reports were typically of more modest housing improvements and potentially less likely to attract heightened media interest however it was also evident that on occasion big local stakeholders in the higherfocus area were able to use their communications structures to have a voice about these local developments in the media in turn this contributed to the big local initiative gaining more coverage rather than knocking it out of the media spotlight as wacquant points out the decision as to whether residents submit to or resist placebased stigma is shaped by their social context and position in the community though modest our review suggests that big local was enabling groups of residents and other community stakeholders to enact a strategy of resistance in the following ways firstly such programmes offer the resources and opportunity to increase local capacity to engage with the media and have some influence over reporting either through developing residents skills or employing people who can undertake this work on their behalf secondly by generating positive news stories that demonstrate resident activists showing their pride in the area this may theoretically improve other residents internal perceptions of where they live with potential benefits for their wellbeing thirdly where communities gain greater collective control over what happens in their neighbourhood and have the means to articulate positive collective narratives about where they live this may also challenge the power dynamics that typically marginalise lay knowledge finally where residents are represented publicly as being actively involved in civic activity this too can help to challenge portrayals of communities as being disengaged or lacking pride in where they live yet even where positive news stories can be generated in reporting this does not necessarily indicate that wider attitudes towards an area will change as our findings showed positive news stories exist alongside negative stories which may work to counteract the improved coverage which big local generated more generally other researchers have also reiterated the tenacity of placebased stigma and difficulties of achieving lasting change in area reputation to date only limited and mixed evidence exists on whether abis can have an impact on addressing placebased stigma as mason and kearns note this highlights the need for programme developers to more explicitly consider how intervening will serve to address this determinant of negative health outcomes and for future evaluators to include measures of reputation in their studies future quantitative research could also consider the relative impact of reducing stigma compared with tackling improvements in other social determinants moreover given the rise of online technologies such as social media there is potential for future research to draw on approaches in the field of obesityweight stigma in order to consider how other media outlets perpetuate stigma linked to place or are alternatively deployed as a vehicle to counter and resist prejudices limitations articles with partial coverage of an area were not included in the review so it is possible that their inclusion could have resulted in a different balance of coverage kearns and colleagues found for example that newspaper articles reporting partially about areas were more likely to generate more negative than positive coverage however our decision to exclude this set of articles mainly for capacity reasons is unlikely to have affected the coverage of the big local programme as all big local articles were included in prominent coverage finally factors associated with the newspapers themselves such as staff numbers and their circulation patterns may also explain differences in reporting observed the observed decline in coverage in newspaper d described earlier is likely to be reflective of these wider factors at play in this respect a limitation is that detailed information about newspapers was not publicly available nor was it practical to collect this information during the fieldwork period because we did not interview journalists as part of the study reviews of press coverage in future could combine primary fieldwork to gather this contextual information contributing to a more nuanced analysis of coverage well as provide insights into journalists perceptions as to what shapes their reporting about a particular locality conclusion the link between placebased stigma and health is now established given the complex nature of the issue strategies addressing placebased stigma are likely to require multiple actions including investment in physical regeneration of neighbourhoods as well as targeting media coverage nor is placebased stigma likely to be mitigated without addressing the structural causes of inequalities that are rooted in the unequal distribution of power however where abis actively engage residents in shaping local action this can enable communities of place to construct and voice their own narratives about where they live in turn challenging the negative discourses that typically dominant portrayals of disadvantaged neighbourhoods declaration of interest we have no interests to declare

placebased stigma is linked with health and social harms but few studies have assessed what actions may reduce these areabased programmes are one potential strategy but may exacerbate stigma by targeting disadvantaged neighbourhoods we reviewed newspaper coverage in two stigmatised neighbourhoods to identify whether a programme funded in these localities influenced reporting while both areas were dominated by negative coverage the progamme provided an impetus for some positive stories over time and enabled community activists to articulate alternative narratives about where they lived countering negative external portrayals the involvement of residents should be central to strategies to tackle placebased stigma

background research suggests that campus sexual assault is a problem in both the global south and the global north bystander interventions are one of the few prevention methods with some demonstrated efficacy and they are being rolled out at many us institutions of higher education bystander interventions train members of a community to develop awareness of situations where a person might need help and inculcate the skills and confidence to intervene in such contexts students willingness to intervene varies by demographics with traditionally collegeaged white men from urban areas having the highest rates of rape myth acceptance and the lowest support for bystander attitudes while traditionallyaged women of color from rural areas demonstrate the opposite beliefs undergraduates report a range of behaviors they would use to intervene as bystanders that vary by gender evaluations have shown that bystander interventions can positively impact students beliefs attitudes and behavioral intentions on sexual assault prevention students who receive bystander intervention training even if only through hearing lectures report less rape myth acceptance and higher rates of active bystander behaviors immediately after bystander training men in one study reported less sexual aggression and less support for sexual aggression as well as fewer associations with sexually aggressive peers though not all of these effects were not present at 4and 7month followups existing research on bystander attitudes and intentions focuses almost exclusively on individuallevel factors little is known about the social factors that might promote or deter bystander intervention behaviors or shape how bystanders intervene social barriers may make a bystander less likely to intervene to prevent a sexual assault conversely having a relationship with the victim or perpetrator makes intervention more likely research shows that men who drink heavily report less supportive attitudes towards bystander intervention than those who do not regardless of gender students using alcohol report difficulties figuring out if a woman is at risk and if they think she deserves help however barriers to intervention are better predictors of bystanders helping behavior towards strangers than towards friends suggesting the need to consider whether individuals view their role as a bystander in socially mediated ways almost all of the work in this area draws upon selfreports introducing the challenge of social desirability bias to the positive observed effects of bystander training by directly observing students interventions participant observation offers an important corrective to accounts that rely solely upon selfreports experiences of violenceboth as vulnerability to and capacity to commitunderlie the power structures of gendered inequality in wider us society femininity is associated with a vulnerability to violence while masculinity is linked to a potential capacity for violence violence is also used to demarcate hierarchical domination among masculinities individuals even mobilize rape as a means of both marking men with prestigious forms of masculinity as the good guys and emasculating their real or imagined rapist peers often it is men of color who stand to lose from such deployments these gendered ideas about physical power and violence are embedded within bystander prevention efforts themselves that call upon good men to protect women from aberrant men who rape furthermore the premise in bystander interventions that a few bad men commit most campus assaults does not hold up to empirical scrutiny drawing on how sexual violence figures into constructions of gendered prestige and using data from extended ethnographic research among undergraduates we examine how college students act to prevent what they understand to be potential sexual assaults our descriptions of how students perform bystander interventions show that they actively interpret the educational information demonstrated to be effective by these earlier studies in unpredictable and innovative ways resulting in actions that do seem to prevent certain forms of sexual assault but may also generate new risks for other forms we argue that efforts to prevent college sexual assault must take social prestige and intergroup dynamics into account data and methods this paper presents findings from the ethnographic component of a large mixedmethods study of sexual health and sexual violence at columbia university and barnard college1 this paper draws exclusively on the ethnographic research the methods of which are summarised in table 1 data collection for this study ran from august 2015january 2017 all subjects were current undergraduates at columbia university or barnard college ethnographic research participants were either recruited during participant observation by a member of the research team or else participated as a result of having reached out to the research team after hearing of the study through campuswide emails fliers tabling events sponsored study breaks or from a community member researchers gathered demographic information on all subjects to ensure that they represented a range of backgrounds the two faculty investigators leading the shift ethnography hirsch and khan developed all ethnographic research instruments the study relied upon two advisory boards one board was a group of approximately 15 students all of whom were ineligible to participate as subjects in the research members of the research team met with this advisory group every week for 2 hours to discuss research ideas the purpose of this group was to develop a better understanding of student culture so that basic design features would be responsive to the local environment and to help introduce the research team to different student communities these students were never shown any data nor were they allowed to know the identity of any study participants advisoryboard members were paid for each semester of participation the second advisory board was comprised of key institutional actors such as deans or other studentfacing senior administrators the principal investigators met with this board approximately twice each semester because the research was intended to generate policy recommendations that touch many divisions areas of responsibility administrators were integrated into the design from the start of research seven team membersthree men and four womenconducted ethnographic research representing a range of racial and class backgrounds as well as sexualities and religions at any one time up to five researchers were in the field columbia universitys interpretation of federal title ix regulations requires all university faculty and staff except for those who interact with students as clinicians providers of pastoral care or confidential sexual assault resources to be mandated reporters of any suspected sexual assault the shift research team was granted a researchspecific exemption from mandatory reporting requirements the ethnographic team met at least once a week for at least two hours to discuss all fieldnotes observations and interviews produced that week the research team stripped all identifying information in the interviews from the data and stored the data on a secure site that only investigators could access fieldnotes were written in a standardised format without identifying information and all names were changed fieldnotes were coded using emergent thematic coding and codes were standardised across all fieldnotes after data collection concluded in conversation with all team members driven by the studys framing examining the individual interpersonal and environmentallevel factors shaping sexual health and sexual assault among undergraduates the ethnographic data analysis used an inductive approach after being transcribed and checked two research team members independently coded interviews investigators used eleven themes for coding reflecting the descriptive elements the research team judged to be most critical to capturing the breadth of students social and sexual lives based on an analysis of relevant literature on sexual assault and shared readings of fieldnotes socializing partner selection relationships sexual projects stories of sexual assault consent telling someone about sexual assault mental health experiences alcohol and substance use sexual experience and other notes the investigators also wrote up detailed narratives of each incident of sexual assault this document included information on the victims personal interactional and institutional experiences before the assault leading up to during and shortly after the assault and then some time after the assault this paper draws on incidents of bystander intervention witnessed in participant observation and recounted in idis as well as all sexual assaults reported in research analysis examined when interventions were successful not successful or possible but not taken as well as students explanations for their responses with the goal of surfacing the shared social logic underlying how students apply bystander strategies data analysis was conducted by the lead author hirsch and khan results gendering bystanders and victims bystander intervention training given by the university during orientation emphasises that anyone can be a victim of or intervene as a bystander to sexual assault students however reported gendered expectations about who could be a victim and who could act as a bystander most students understood sexual assault within the gendered context of a heterosexual coupling noting that women were most at risk for sexual assault although some heterosexual students and most queer students noted that trans gender nonbinary and queer men could also be vulnerable most students were skeptical that heterosexual men could be victims of sexual assault those who did acknowledge mens possible victimisation emphasised that although men could be sexually assaulted in technical definitions of the term they did not undergo the psychological experiences of real rape most students reported that heterosexual women were most likely to be assaulted but only heterosexual men consistently reported acting as bystanders and were seen to be potential bystanders in interviews and field observations heterosexual men consistently spoke about how they had or would intervene and how their student organizations intervene in potential sexual assaults in contrast many women reported both procedures for avoiding individual danger including socializing and drinking strategies and criteria they wanted potential partners to demonstrate before having sex they rarely spoke of intervening on behalf of a close friend this gendered understanding reproduced the ideas that only men are potentially dangerous and that vulnerable women need protection by men heterosexual men decide to intervene as bystanders for three reasons liability reputation and moral commitment fraternities athletic teams and student organizations face organizational liability should an incident occur at an event they sponsor one fraternity brother told us about how brothers need to purchase insurance that wont cover students as alcohol is served at events j ust because the national organization makes us do it… w e have to be super careful because we have really no insurance if anything happens so we always have to be very meticulous about how things happen… students living in a building where an organizations party took place may be held legally and financially liable for an assault men also worried about the reputational consequences of not stopping an assault or of being associated with in students words rapey people during the course of the study students routinely exchanged information with one another about known dangers and diligently avoided and ostracised students or organizations known to be rapey one man admitted that he pitied a known rapey man as honestly in a way… hes a fucking pariah… a s shitty as it sounds i dont fucking want to be seen sitting with him at the dining hall because then youre like friends with the raper you know… it could… fuck up your life too students saw proactive bystander intervention practices as the surest way to demonstrate their and their organizations moral status as good men for men removing potential offenders from their events was a strategy to prevent their peers from perceiving them as responsible for or condoning of sexually aggressive behavior moreover the men in our study understood their organizational practices not just as liability reduction or reputation management but also as what a moral human being would do they overwhelmingly viewed assault as a moral violation and understood themselves as moral responsible people they thereby expressed a duty to stop sexual assault these expressions were often passionate expressing a deeplyheld moral duty the president of one student group recounted having stopped a man at a recent event who repeatedly asked a woman out only to hear later that a different woman that night had been sexually groped t he fact that it can… happen under the radar like that is scary… t he fact that… i saw that and was able to stop it but couldnt stop… the really bad things is… just sad how students intervene in interviews casual discussions and observations nearly every man described a wide range of tactics to intervene including speaking with a person about their behavior escorting an intoxicated student out of the party to their home or a safe space stopping a student using physical force and getting a student high on marijuana so that they would in the words of one man fall asleep or get chill and calm down or… just get the spins and start puking students criteria for determining if a mans behavior merits intervention included vague feelings like giving me bad vibes showing thatin the absence of clear and agreedupon criteria to identify a situation that requires intervention in trainingsstudents rely on their own personal judgments men intervened differently depending on their relationship to and the gender of the person deemed to be creating a risky situation either by acting aggressively or by putting themselves at risk table 2 shows how students selfdescribed responses to a dangerous situation vary based on the gender of the person intervened with and their relationship to the student intervening students tried to remove intoxicated women from parties if they knew them by personally taking them to an empty lockable room or to their home if they did not by finding the womans friends and having them do so if the target of the bystander intervention was a man with whom a bystander shared a social connection strategies were generally understated indirect and private students tried to distract or incapacitate friends behaving inappropriately but they did not embarrass them publicly or raise broader awareness of their problematic behavior by either forcibly removing or fighting them however students routinely demonstrated and endorsed public and violent interventions with men outside of their organization or friend groups unintended social impacts stopping or being accused of potentially perpetrating a sexual assault is part of the construction of masculine prestige structures on campus men who are institutionally positioned to control social spaces earn reputations as good men by patrolling their events a man selfdescribed as very renowned for being the kind of noble shit kind of guy in a prestigious fraternity noted that if he sees a guy coming off too strong at parties he hosts his first step is… getting them off the property as soon as possible however he contrasted this approach with a subtler educational method used for fraternity members theres guys… that come off too strong to some girls in our fraternity just because theyre younger kids that dont exactly know how to talk to girls… and we try to help them… be like you need to chill a little bit more being publicly asked to leave an event labels a man as rapey other students may then avoid them out of fear both for their safety or for the appearance of condoning such behavior one woman spoke about avoiding a known rapey man in her dorm who had been asked to leave a party his first year as i just worr y that its… sending some sort of signal… like if i hang out with him… it sends a signal to other people that… hes trustworthy as such men who are institutionally positioned to control event spaces with their friends and to intervene against less connected men are able to accrue social prestige through interventions whereas men without networks that give them control over social space are more likely to be targeted for intervention and thus perceived as rapey these practices do not protect against some forms of sexual assault most obviously we learned of several sexual assaults over the course of our fieldwork that occurred immediately after the victim and the person who assaulted them had been in a public space where others observed their behavior and inferred mutual sexual desire we saw no evidence of sexual assault facilitation instead we would suggest that in the vast majority of these cases students assumed that the person assaulted was into the person who assaulted them and thus they did not intervene it is critical to remember that all of these behaviorsperpetration and bystander intervention occur in a social context in which students are also trying to facilitate sexual encounters their friends desire in other words students are being trained to intervene to stop nonconsensual sexual encounters but in those same contexts they are frequently simultaneously trying to facilitate consensual sexual encounters all under conditions where often they are drinking and where verbal communication is limited and potentially difficult the counterpart of students avoidance of men and organizations known to be rapey is that clubs fraternities teams and individual men without these labels are perceived to be safe this provides students with a potentially illjustified sense that sexual assault is less likely in such venues or with such company take one womans account of her rape at a prestigious fraternity her freshman year where bystanders not only did not stop her assault but also contributed to it by suddenly leaving her alone in a room with her prestigious perpetrator i was embarrassed because i was so dumb to… come there in the first place and… not realize that… i was only going there to… have sex with this guy… i thought oh im cool im getting invited to prestigious fraternity … im a freshman and im getting invited to prestigious fraternity thats so cool… a nd i was embarrassed because i… felt dumb for not knowing why i was invited because of the fraternitys prestige she not only did not recognize the potential risks but also felt embarrassed for not understanding that a brother would have reasonably expected sex from her in return for an invitation over the course of the study the preponderance of sexual assault incidents about which we learned were related to students or student organizations not marked as rapey in avoiding reputationally rapey students and organizations our data suggests students may overlook potential risks from unmarked groups students gendered understandings of sexual assault and bystander intervention also contributed to the social illegibility of some forms of assault students assumed heterosexual men were not at risk for assault and reported not intervening to stop women making sexual advances to intoxicated men even after noticing the womens sexual intent and the mens inability to consent in instances of heterosexual men being assaulted other students were present immediately prior to the incident and noticed both the mans incapacity and the womans sexual intent but in no instance did anyone intervene to interrupt those assaults finally students assumed their own and others good motives but some interventions actually created risks for the ostensible beneficiaries of these bystander practices several sexual assaults occurred after men took on the role of bystander and walked intoxicated women home these men either assessed that the woman was too drunk to be at a party or others had assessed this and asked a man to be the responsible bystander and walk the woman home for one woman her exboyfriend and his friend were asked by her friends to escort her home after they identified her as being too drunk to stay in the bar in her later retelling the men took her flirtatious behavior and their previous relationship to indicate sexual interest and subsequently raped her no students interviewed or observed during fieldwork viewed men acting as bystanders to be possible perpetrators moreover the framing of men as good bystanders and women as potential victims as others have anticipated reinforced stereotypes about womens relative weakness and mens chivalry even when students experiences seemingly ran counter to this gendered framing take for instance this womans narrative of being helped by a friend i think he was… a really good guy… and… kind of saw that i was… sick and was like… l ets get you home… and so i i got home i was fine i was just i didnt really remember if anything happened in retrospect i dont think that we had sex… but i was worried and… that week i got mono and my period stopped so i was super worried that wed had sex and i… took a pregnancy test… but no i was just like really sick but yeah no that was really scary in her own account this really good guy had noticed that she was too intoxicated to safely remain at a party and walked her home at which point he may have sexually assaulted her she was uncertain about what transpired next and sufficiently worried to have sought a pregnancy test and yet her story emphasises her own incapacitation and his laudable gendered behavior in assisting her conclusion like all singlesited research generalizability to other settings is a limitation our findings lay the groundwork for comparative ethnographic research in other higher education settings on how students take up and enact sexual assault prevention messages the students we studied showed a high degree of stigma towards sexual assault perpetration this may be a result of a unique student population at these universities or an indication of changing social trends since scientific research on this topic began thirty years ago finally due to the fact that sexual assault is illegal socially stigmatised and largely takes place in private settings it is nearly impossible to observe directly requiring us to rely on students narratives of their own sexual experiences and sexual assaults though we were able to observe interventions in public spaces like parties and bars students are stigmatizing sexual assault perpetration however designating men rapey has also become a means of demonstrating social prestige in the field we saw it utilised more to reproduce and justify social prestige hierarchies than to disrupt predatory behavior our findings suggest that the stigma attached to sexual assault perpetration has created social conditions that encourage men to minimise their friends and their own sexually aggressive behaviors while publicly shaming more socially vulnerable men with whom they have few social connections this is not to say that sexual assault perpetration should not be socially stigmatised rather our point is that we must provide students with accurate facts about who perpetrates sexual assault evenor especiallyif those who commit assault are trusted prestigious men research has long demonstrated that most perpetrators of sexual assault have intimate relationships with their victims student trainings need to explicitly confront the myth of the mysterious outsider and the campus serialrapist and acknowledge both the fact and the consequences of the fact that many perpetrators will be members of ones ingroup practically this means that trainings should address how to intervene among ones friends how to acknowledge that ones friends consent practices might be suboptimal and how to influence friends to change their behavior outside of the moment of directly intervening in an assault indeed one potential explanation for our finding that students uniformly viewed sexual assault to be a morally reprehensible act that they wanted to prevent in light of the persistently high rates of sexual assault on campus would be that at least some of those who commit assault do not understand that they are engaging in nonconsensual sexual behavior this requires fostering a campus community in which such students canhopefully before having sexlearn better consent practices this includes assisting peers to help their friends although existing bystander intervention trainings call attention to the potential for anyoneregardless of gender to perpetrate sexual assault one key takeaway is that more needs to be done to disrupt the gendered heterosexual frames within which students understand sexual assault and bystander intervention as others have noted bystander interventions can reinforce gendered expectations of womens physical vulnerability and mens potential to both act against and for women violently although others have suggested training women in selfdefense as a better means of dismantling these stereotypes we are skeptical in the efficacy of these measures given that alcohol use is an important part of the context in which many college students are sexually active as well as given the complex temporal and social nature by which students make sense of sexual consent however prevention trainings and conversations about sexual assault with university students need to more intentionally disrupt students gendered notions about who is a potential victims and who should behave as a bystander to this effect we recommend that universities should provide all students with sexual assault prevention training that emphasises both potential selfdefense and bystanderintervention techniques includes role playing of potential situations to target explicitly disrupt gendered expectations and teaches physical and verbal techniques that could be used to prevent an assault bystanderintervention training must also acknowledge that bystanders even effective ones can also be perpetrators of sexual violence that requires encouraging students to evaluate bystanders critically and to acknowledge that bystanders might have their own motivations for intervening and might assess a victims sobriety or interest in ways that can still put someone at risk finally our findings demonstrate that campus sexual assault and the necessary preventative measures to stop it occur within culturallyspecific settings visàvis gender alcohol consumption and campus social life this underlines the need for comparative research in diverse locations within the united states and internationally as well as at a broader range of institutions in order to identify contextspecific prevention opportunities in addition the mapping of masculine prestige onto sexual assault prevention merits more research and consideration in designing studies that examine campus sexual assault particularly as relates to commonsense knowledge about risky populations

sexual assault is a part of many students experiences in higher education in us universities one in four women and one in ten men report being sexually assaulted before graduation bystander training programs have been shown to modestly reduce campus sexual assault like all public health interventions however they have unintended social consequences this research examines how undergraduate men on one campus understand bystander intervention and how those understandings shape their actual practices we draw on ethnographic data collected between august 2015 and january 2017 at columbia university and barnard college our findings show that university training and an earnest desire to be responsible lead many men to intervene in possible sexual assaults however students gendered methods target more socially vulnerable and socially distant men while protecting popular men and those to whom they are socially connected students actual bystander practices thus reproduce social hierarchies in which low prestige may or may not be connected to actual risks of sexual assault these results suggest that understanding intragroup dynamics and social hierarchies is essential to assault prevention in universities and that students actions as bystanders may be effective at preventing assaults in some circumstances but may lead to new risks of sexual assault

background covert contraceptive use is the practice of using a family planning method without the knowledge of the partner 12 in contemporary literature it invariably refers to the use of such methods by a woman without the knowledge of the male partner the practice is common among women in subsaharan africa and it has been linked to the degree to which women are able to exercise autonomy in their reproductive choices 3 4 5 it is also said to represent misperceptions between partners about each others views on the use of contraceptives and aspirations regarding family size 1 since the 1994 international conference on population and development the empowerment of women to enable them to exercise the optimal reproductive health choices has been an issue of major concern 6 covert contraceptive use is considered to be symptomatic of the lack of ability of a woman to freely exercise her reproductive rights 13 the extent to which interventions to empower women in ssa has impacted on the practice of ccu remains unknown the practice of ccu has been studied in different sociocultural settings in ssa the prevalence is found to be high among women in maledominated rural societies estimates of between 6 and over 50 have been reported 1 7 8 9 among the factors found to be associated with the practice are the fear of partner violence withdrawal of economic support and partner accusations of infidelity 10 11 12 13 a major theme that runs through the literature on ccu is the extent and quality of spousal communication on fp 14 15 16 correlations have been established between the frequency of spousal communication and contraceptive use in general with women more inclined to adopt a covert approach where there is infrequent or no discussions about fp with the partner 11718 the desire of women to use contraceptive covertly is said to reflect in their choice of fp methods 19 20 21 methods such as the injectable iud pills and implants are considered to lend to discreet use by women while methods such as the condom foaming tablet and diaphragm require the awareness of the male partner for effective use 2223 an effect of the quest to achieve covert contraceptives use is the possibility that women may be compelled to use fp methods that do not necessarily meet their biological needs ghana was one of the first countries in ssa to adopt an explicit comprehensive population policy in 1969 among the key provisions of the policy is the promotion of fp as an important part of the countrys development agenda evidence from the ghana demographic and health survey 2008 indicates that 98 of all women and 99 of all men know of at least one method of contraception the use of modern fp methods has increased more than threefold between 1988 and 2008 in the same period total fertility rate dropped from 64 to 40 putting ghana among countries with the lowest tfrs in ssa 24 in spite of these achievements the level of unmet fp need unwanted pregnancies and unsafe abortions remain high 2526 pervasive gender inequities and norms regarding the subordination of women give men greater power than women in the exercise of reproductive rights in ghana 2728 very little is known about current practices regarding ccu in ghana this is particularly the case of single women as they have been excluded in most previous studies very little is known about how the experience of single women compares with that of women in presumably stable relationships an improved understanding of the practice of ccu is needed to inform the design of interventions that will promote the ability of women to exercise their contraceptive choices with autonomy and without strain on their relationships in the case of single women it is also needed to inform the design of interventions to reduce unwanted pregnancies and unsafe abortions 2930 we conducted a study among women attending a fp clinic in a municipality in ghana to establish the prevalence of ccu and to identify and explain the factors that influence the practice methods study design and site a crosssectional mixedmethod study was conducted at the reproductive health clinic at the sunyani municipal hospital in the brong ahafo region of ghana this rhc is part of the public health unit of the sunyani municipal health directorate and offers comprehensive reproductive health services that include counselling and provision of a wide range of fp methods the rhc serves an urban population of about 250000 people 25 of whom are women of childbearing age the majority of women in sunyani are petty traders peasant farmers and workers in the formal sector over 90 of women in the municipality earn less than three hundred cedis a month 31 quantitative component all women who were using at least one modern fp method and attended the rhc between march and april 2012 were targeted to be interviewed with a questionnaire that inquired into sociodemographic characteristics type and duration of use of the method and male partner awareness of the use of a method the question to elicit ccu was posed as is your partner aware that you are using a modern fp method the questionnaire was administered by a trained research assistant who was a nonhealth worker to assess the extent to which women were economicallyempowered a question was asked about the proportion of their total household cost that was supported by their income respondents were also asked about their willingness to recommend the use of modern family planning methods to their friends and whether their own use of modern fp methods conflicted with their religious beliefs the interviews were conducted in the respondents preferred language although they were conducted within the premises of the rhc privacy was ensured with the use of a private room within the facility a target sample size of 300 women was set to afford 95 confidence level in estimating the prevalence of ccu within a margin of error of 5 assuming a covert use prevalence of 26 data from the completed questionnaires were double entered into computer using epidata software it was then exported into stata version 12 for analyses that were descriptive and exploratory of the relationship between ccu sociodemographic characteristics and practices and intentions regarding fp use covert contraceptive use was defined as the practice where a women used a modern fp method without the knowledge of the male partner bivariate and multivariate logistic regression analysis was performed to identify predictors of ccu at both bivariate and multivariate levels an association was considered to be significant if the twotailed pvalue was less than 005 only variables that were statistically significant in the bivariate analysis were included in multivariable model the findings are reported in two tables that show factors related to the sociodemographic characteristics of respondents and factors that are related to fp intentions and practices exploratory analyses was also performed to describe in further detail the characteristics of groups found to be significantly likely to practice ccu qualitative component the findings of the survey were used to develop a guide for conducting indepth interviews and focus group discussions to further explore the practice of ccu and contextualize the findings of the survey the guide explored the concept of autonomy among single women the influence of religion birth spacing and spousal communication and how they affect ccu a research assistant with experience in qualitative data collection conducted the idis and fgds a purposive sample of 36 clients at the same facility were asked to participate in 8 idis and 4 fgds between january and february 2015 the participants were selected based on the fact that they were clients to the facility we actively sought to include women who were current users of a modern fp method however a few of the participants in the fgds were women who were not on any method but were at the clinic to discuss the various options with the fp counsellors all the participants however needed to willingly volunteer to participate in the idis and fgds the number of idis and fgds was dictated by resource availability and time limitation no woman participated in both idis and fgds except in the case of idis with two women who declined all idis and fgds were taperecorded transcribed and typed into computer both women who declined taperecording were muslims who feared they could be heard on tape by a third party who might compromise their ccu they were however agreeable to notes being taken and reported we used a framework approach to analyse the data the framework was based on the findings of the survey and the guide we used in the idis and fgds the objective was to obtain information that will help to contextualize the findings emergent themes were also sought and noted the analysis including coding were performed by two researchers who worked independently but later compared and reconciled their findings results we interviewed 300 women in the survey this represented 99 of the women we approached the only woman who refused to be interviewed gave no reason for her refusal about 97 of the respondents were aged between 18 and 41 years and nearly half were between the ages of 26 and 33 years the majority were either married or cohabiting about 26 of women interviewed were single while a fifth of women had no children 42 had two or more of those who were single divorced or separated 45 had at least one child only 26 of respondents had had education beyond high school about 9 of them had had no formal education the majority were christian muslims and traditionalists constituted the remaining 25 the majority of women lived within the sunyani metropolis only 14 of women indicated that they made financial contributions that met at least 50 of their total household costs the fp methods used by participants included the injectable oral contraceptive pill implant and intrauterine device overall about a third of women admitted to ccu this however varied according to the type of fp method being used fig 1 being single including being divorced or separated was the strongest independent predictor of ccu single women were more likely to be in ccu than married or cohabiting women table 2 single women with no children were also more likely to practice ccu than married or cohabiting women with children among single women alone covert use was not significantly influenced by whether a woman had a child or not uncertainty about the future of relationships emerged in the fgds and idis as an important underlying reason why single women practised ccu they indicated they did not feel obliged to make that disclosure since the relationship was not marriage a comment by a participant that ccu was statement that expressed a womans autonomy was met with enthusiastic affirmation by the majority of participants in the fgds once the man has not married me i am my own person and i do not need to let him know if he hasnt married me yet then i am myself and what will help me is what i will do consistent with the above there was near unanimity that such autonomy got compromised once women got married during the idis at least two women spoke about how ccu enabled single women to as and when they found necessary feign pregnancy and use it as a basis for claiming money from their partners this money was claimed for the purpose of procuring an abortion when this was brought in the fgds it met with the approval of most participants no participant countered the opinion the approval of participants took the form of enthusiastic nodding and giggling with older women appearing eager to indicate their agreement a corroborative comment described a situation where this could happen you may have boyfriend who is stingy and the only way you will be able to get money off him will be to feign pregnancy and appear to agree with him to abort it how will you be able to do that if you let him know you are using a fp method in multivariate analysis the other sociodemographic characteristic that was significantly associated with ccu was religion muslim and women who identified themselves as traditionalist were significantly more likely to practice ccu than nonmuslim nontraditionalist this effect of religion was evident during the idis and fgds as many women recounted how much the use of fp was frown upon in muslim and traditional societies in the municipality the two women who declined to have their interviews recorded spoke passionately about possible dire consequences for them if members of their families or close associates of their partners found out that they had attended the fp facility and were actually using a method christian women also recounted similar possible adverse repercussions for their relationships this was however to a lesser extent the direction of the association between religion and ccu did not surprise any of the participants in the idis and the fgds the age of women and the number of children they had did not significantly predict ccu in multivariate analysis this was not particularly surprising to participants in the idis and fgds a few participants opined however that they expected younger women and women who had about four children or more to be more likely to practice ccu this was linked to the findings regarding singles and disagreement with spouse over the desired target number of children respectively among the factors related to fp intentions and practices that were explored only the desired length of time to a next pregnancy was found in multivariate analysis to be significantly associated with the likelihood of ccu women who preferred to have their first or next child in 4 or more years from the time of the interview were more likely to be in ccu than women who intended to have children within 4 years of the interview related to this women in the idis and fgds conveyed the impression that the desires of women regarding the appropriate number of years in between pregnancies often differed from that of their partners it was suggested that men often wanted to have all their desired number of children within a few years while they wished to space them well enough to be able to recover fully from the physiological effects of the preceding pregnancy this was said to be more the case when male partners were much older although the use of the coc was associated with ccu in bivariate analysis this was not found to be an independent predictor in multivariate analysis the practice of ccu was not found to be significantly associated with the use of any particular fp method discussions around this during the idis and the fgds revealed that the choice of particular fp methods was dictated more by factors that were not explored in this study this included client and or provider convenience advice received from the nurse who attended to them at the time of the visit the availability of the method at the facility at the time of a visit the availability onsite of a nurse who was trained to offer particular methods these were typically put as follows the side effect of the injection is minimal compared to the other methods yes i use the injectable not because i wish to hide it from my husband but because i want to avoid the risk of forgetting the nurse told me it was the best i was told the nurse who could put the iud was not around so i opted for what was available it was generally felt however that methods such as the injectable implant and intrauterine device were easier to use covertly than the oral contraceptive pill overall women did not consider ccu to be an ideal practice since among other reasons it denied them the support of their partners such support included reminders of dates of clinic appointments compassion and understanding when hormonal contraceptives caused disruption to menstrual flow and interfered with sexual pleasure it also put them at considerable risk of the loss of trust in case the partner found out women appeared to be compelled into ccu by the circumstances of their relationships which may it difficult for them to bring up issues about contraceptives use with their partners underlying this concern was a fear that they could be suspected of infidelity the fact that they could not anticipate partner support also constrained women in their choice of methods as they had to choose methods that were least likely to disrupt the pattern of menstrual flow or sexual pleasure from both fig 1 covert use per family planning method used among women presenting to a reproductive health clinic in sunyani ghana personal and nonpersonal experiences participants mentioned some of the consequences of unsuccessful ccu to be physical abuse extramarital affairs withdrawal of financial support and threats of divorce i am not ok with using contraceptive without the knowledge of the my partner but i do not want my husband to take another wife in order to achieve covert contraceptive use women appeared to go to great lengths a participant recounted how she travels nearly 40 km to come to the rhc just so his husband does not find out that she is visiting a fp clinic another women recounts how after each visit to the clinic she passed by her mothers house to drop her rhc attendance card before proceeding to where she lives with the husband on what women wanted the attitude of health workers to be towards ccu there was unanimity about the expectation that fp nurses and counsellors need to appreciate the challenge clients faced in this regard they felt that nurses and counsellors needed to consider it a duty to support them to achieve their intention of covert use some went further to suggest ways through which health workers could assist it included the clinic making a policy to keep all patients cards at the facility and not giving any materials to clients to send home they should assist us by keeping the folders in the hospital instead of giving to us to take home they should have a high sense of confidentiality because some of them are staying in our areas and may come into contact with relatives of ours discussion this study has used a mixedmethods approach to explore the practice of ccu among women attending a reproductive health clinic in a municipality in ghana the ccu prevalence of 34 found in this population compares with 7 in urban zambia 20 31 in urban mali 32 and over 50 in rural northern ghana 9 the wide variations in prevalence in different settings may be the result of the different methodological approaches used in the different studies and the lack of a standard definition for ccu 3334 while some studies obtain data interviewing both partners 33 35 36 37 most others do so interviewing only women 3238 similarly while some studies obtain information through communitybased methods 13637 others do so through facilitybased approaches 3438 for a practice that is dictated by strong sociocultural norms such differences in approaches are likely to lead to varying estimates of the extent of the practice the use of such prevalence values and comparisons across different settings should to be done with due regard for the setting in which the studies were conducted and the methods that were used from the sentiments expressed by women in this study it appears ccu is not a practice that women readily admit to it is thus probable that the ccu prevalence of 34 found in this study may well be an underestimation of the true extent of the practice in any case such a high level of ccu cannot be ignored by the health system and needs to be taken into account in the planning of reproductive health services in this and similar health facilities in ghana there is the need for more indepth studies into the practice with the view to developing interventions that will assist women who are uncomfortable with covert use and need assistance to engage their spouses to be supported while women who wish to maintain covert use are assisted to do so currently reproductive health services in ghana maintain no routine records on the extent of covert use women distressed by spousal disapproval of contraceptive use have no formal avenue for seeking assistance within the health service greater advocacy is needed to bring the issue of ccu to the fore interventions need to be developed to respond directly to the challenge that it poses to the right of women to have unfretted access to the full range of options in fp methods and to be open about it if they wish to do so the other attributes of the practice of ccu such as the influence of religion and birth spacing intentions are consistent with established knowledge about the adoption of fp methods by women in ghana 12732 they lends credence to suggestions that the social constructs around contraceptive use in ghana are rooted in sociocultural norms and male dominance remains a formidable theme 182739 although ccu has rarely been mentioned in relation to single women it has been anticipated that the problems associated with communication and reproductive decisionmaking could still apply 140 in spite of this contraceptive use by single women remains one of the least studied areas in fp the finding in this study that single women are more likely to practice ccu than married women and the insight provided in the followup qualitative component gives indication that there is some uniqueness in the behaviour of single women regarding their use of contraceptives while it is conceivable that women in less binding relationships would practice ccu as a statement of their autonomy to consider that it could be a means for achieving financial gain in a relationship was an unanticipated finding covert contraceptive use by single women appears to be premised on an anticipation that their relationships is not guaranteed to go longterm the urge to use contraception secretly and possibly be able to feign pregnancy appears to be a preemptive measure taken by single women to minimize their losses in the event of a breakdown in the often maledominated relationship this possible explanation is supported by the fact that at three hundred ghana cedis a month the majority of women including single women living the municipality do not earn enough to meet the demands of living unsupported in a municipality and are therefore vulnerable economically 31 in this study although women were of the view that using the injectable iud and implants better facilitated covert use than the pills we did not find a significant association between the type of methods women used and whether they used them covertly or otherwise this finding is in contrast with that of a study in urban ndola in zambia where users of the injectable were 4 times likely to be in covert use than users of the ocp 1 similarly but rather less definitely studies in ghana and some other countries in ssa have attributed the popularity of the injectable to the ease with which it can be used covertly 193341 in another study in zambia however women who made contraceptive decisions without involving their spouses were rather 30 less likely to be using the injectable longacting and permanent methods this somewhat contrasting picture in the pattern of partner involvement and the type of methods women used may be attributed to the fact that in all of these studies there has been a failure to account for the effect of availability and access to the different types of fp methods in the clinics where women seek services evidence of how health system and provider factors affect the adoption of particular types of fp methods has been demonstrated in studies across ssa 214243 in future studies that explore the possible association between the type of fp method women adopt and ccu should give consideration to health system and provider factors that affect availability and access to the various methods this findings of this study have highlighted the wellreported disconnect in attitude towards contraceptive use between partners 1544 it is an irony that in spite of the apparently low level of reported spousal communication about contraceptives use many women report partner disapproval as the reason they practice ccu the extent of this disproportion suggest that many of such women do not actually discuss the issue with their partners but rather make presumptions of spousal disapproval as other studies have demonstrated this presumption may not be always correct as attitudes towards contraceptives use have not uncommonly been found to be similar among couples interviewed separately and then together 1845 even where differences have been found couples were less likely to be using a method when the wife wanted to have more children and more likely to be using one when she wants to stop childbearing 46 it is well possible therefore that in some situations and contrary to widelyheld constructs a womens use of a method is dictated by an intrinsic desire and spousal disapproval may be more of perception than reality in this urban sample we found that mass media was the dominant source of information on fp we consider this to offer leverage for the fp program in ghana as it creates the possibility for sending messages that are targeted at overcoming specific challenges to fp access and unfretted use promotional messages that are designed on the basis of evidence from research into the practice of ccu need to be developed they should be targeted at increasing knowledge and countering the many myths and misinformation that persist in ghana about fp 47 interventions that increase male involvement need to be mainstreamed in the delivery of reproductive health services to encourage spousal communication and shared decisionmaking 1448 this is likely to save many women the risk anxiety and psychological distress associated with ccu in this study we found that none of the women who indicated that their husbands were the main source of fp information practised ccu our study has a number of important limitations the sample size was not adequate enough to enable indepth exploratory analysis of the factors that were found to be independently associated with ccu the inadequacy in the size of the sample also manifested in the wide confidence intervals around some of the estimates in the multivariate model it also affected analysis of the data on the effect of the main sources of fp information interpretation of views expressed in the fgds should also take into account the fact that some participants were not on any modern fp method at the time of the study another limitation was the lack of data on provider and health system factors that may have affected the type of fp methods women ultimately used the analysis in this regards would have enhanced by the availability of data on the quality of fp services and the availability of the different types of fp methods an inadvertent error in precategorising the ages of respondents at the time of questionnaire design also limited the amount of information that could be generated in that analysis conclusions covert contraceptive use is a sign that providers must continue to take into account womens rights to confidentiality in fp services 1 the practice is high in this population and it has disturbing emotional and psychological effects on women it hinders their ability to optimally exercise their reproductive rights the health system needs to acknowledge this and institute measures to assist women who wish to practise it to do so safely and assist those who wish to disclose their use to their partners to do so through the offer of couple counselling the peculiar needs of single women needs to be taken into consideration abbreviations ccu covert contraceptive use fgds focus group discussions idis indepth interviews ocp oral contraceptive pills ssa subsaharan africa tfr total fertility rate authors contributions fb conceived the study designed the instruments supervised the data collection drafted and finalised the manuscript gpm and noa contributed to the design of the instruments participated in data collection and analysis td and pa contributed to design of the tools used in the collection of qualitative data she also provided critical review of the manuscript in addition pa cosupervised data collection at the reproductive health centre all authors read and approved the final manuscript competing interests the authors declare that they have no competing interests

background covert contraceptive use ccu in subsaharan africa is an indication of womens inability to exercise autonomy in their reproductive choices the aim of this study was to assess the prevalence and determinants of ccu among a sample of fp clients in a municipality of ghana methods we conducted a mixed method study among women attending a public reproductive health clinic in sunyani a city of over 250000 inhabitants in ghana an initial survey inquired into sociodemographic characteristics use of family planning fp methods and partner awareness of contraceptive use the predictors of ccu were explored using logistic regressions we used the findings to develop a guide which we applied indepth interviews and focus group discussions with attendants at the same facility qualitative data analysis was conducted using a framework approach results we interviewed 300 women 48 of whom were aged between 2633 years the injectable was the most widely used method 56 the prevalence of ccu was 34 in multivariate analysis single women were more likely to practice ccu than married or cohabiting women adjusted or 1212 95 ci 473311 muslim and traditionalist women were similarly more likely to practice ccu than nonmuslim nontraditionalist adjusted or 456 229906 women who preferred to have their first or next child in 4 or more years from the time of the interview were more likely to be in ccu than women who intended to have children within 4 years of the interview 257 137483 single women saw in covert use a statement of their social autonomy to succeed in ccu women wished that clinic attendance cards would not be given to them to keep at home though many participants saw in ccu a source of anxiety they expected health workers to consider it and uphold confidentiality in the provision of services conclusions covert contraceptive use was high in this municipality and being single was the strongest predictor of the practice providers of fp services should reflect on how to adequately address the challenges faced by women who practice ccu

introduction aotearoa new zealand and the rest of the world are in the midst of a data revolution whereby more data is collected stored used reused and linked than ever before data sharing has increased rapidly as has our ability to link data and there is increased secondary use of data in predictive analytics and models children are particularly vulnerable in this context due to their inability to consent to various data processes for themselves there is an increasing need for research focusing on child rights in the digital age the 2021 lancet and financial times commission on governing health futures 2030 growing up in a digital world emphasized the need for trust in digital health by enfranchising patients and vulnerable groups and ensuring health and digital rights digital rights for children refers to child rights the oecd recommendation on children in the digital environment and others applied in the context of digital environments technologies and the subsequent data generated however it is also important to consider childrens moral rights particularly the right to an open future which should protect children from having important life choices shaped by others before they have the ability to choose for themselves without a strong ethicsand rightsbased approach to child health data management in the current digital climate there are risks of potential harm including privacy breaches the continued production of racialized datasets and prediction models and failure to attain adequate consent prior to linkage supporting data rights also gives a voice to minoritised and traditionally marginalized populations such as indigenous groups regarding their own health wellbeing and rights to selfdetermination walter refers to indigenous data sovereignty as …the right to determine the means of collection access analysis interpretation management dissemination and reuse of data pertaining to the indigenous peoples from whom they have been derived or to whom they relate in nz this is supported by the rights articulated in the treaty of waitangi and the united nations declaration on the rights of indigenous peoples health and other research must therefore consider how data linkage can engage with māori data governance whether the outcomes of data linkage will provide meaningful benefits and what protective mechanisms are in place to minimize any anticipated harms currently the predictive potential of linked datasets is limited by acknowledged racial bias in data collection algorithm development and analytical decisions which can uncritically reproduce racialized outcomes there is potential for societal and health gains when utilizing large data sets including integrated data from a range of sectors in addition to the health system in nz for example the integrated data infrastructure enables the production of additional statistics and research without additional respondent burden through data linkage from the education welfare immigration justice and health sectors the integration or linkage of datasets has occurred relatively rapidly however posing challenges for data privacy and protection and the extent of linkage does not appear to be widely understood by the public previous research with adults has identified there is potentially social licence for the integration of such data with important caveats such as data quality context researcher responsibility privacy and consent however a review suggests there are key tensions inherent in debates around data sharing involving indigenous communities including the lack of consideration of implications for participants and the importance of indigenous perspectives especially in relation to data sovereignty in nz there is also limited child and family voice present in these debates it is important that childrens and young peoples views are included given their lack of voice in decisionmaking and their inability to consent for themselves research involving digital health and data challenges must capture diverse perspectives including age ethnicity and regional location the aim of this study was to understand the views and expectations of children young people and their parentscaregivers with regards to child health data storage linkage and consent for data use in nz methods study design we undertook focus groups with children young people and their parentscaregivers informed by a critical approach to research that was cognisant of our researcher positionalities especially as a team made up of indigenous and nonindigenous researchers we were informed by kaupapa māori methodological principles as a response to systemic racism and the continuous effects that this has on for example health research and health outcomes in nz focus group conduct was guided by communityup research values as a way of recognizing our accountabilities and responsibilities to the communities we were researching with and as guiding principles for undertaking research in a multicultural and transdisciplinary research team the principles centre on the importance of respectful relationships being seen and known in the community listening before speaking sharing and hosting reflexivity being careful and being humble recruitment potential participants were selected from a convenience sample of families involved in a communitybased health service the study was publicized by the programme coordinator during one of the regular weekly sessions the coordinating researcher also attended the sessions to talk about the study families who had indicated their interest were then contacted by the coordinating researcher by telephone text message and email data collection we held five focus groups in total across the region with parentscaregivers children aged 512 years and young people aged 1316 years either after school or during school holidays the focus groups were conducted by cw nr kt and another facilitator the facilitators had undertaken similar previous research and had experience working in community health settings the parent and child focus groups took place in community centres and were held simultaneously but in separate groups with one to two facilitators taking each group the focus group with young people were held separately all sessions began with a welcome and whakawhanaungatanga to establish connections kai and working through the participant information sheets and consent forms together participants asked questions about the study process and the researchers reasons for undertaking the study written informed consent was obtained from all adults parental proxy consent was obtained on behalf of the children and the children also gave assent to participate themselves we collected participant demographic data on a separate questionnaire the child groups were playbased with games drawing and breaks the focus group topic guide was developed by the researchers focusing on six key domains health information data sovereigntyownership storage sharing linkage and consent sessions typically lasted from 4090 min although the childrens sessions were interspersed with games the sessions were audiorecorded and independently transcribed and photographs of the art sheets were taken data analysis we undertook reflexive thematic analysis of the focus group data in alignment with the methods outlined by braun andclarke the coding was inductive semantic and realist this reflected the original accounts and observations of participants however the analysis was informed deductively by a set of predetermined aims objectives and topic domains that guided data collection and could produce applied findings cw led the thematic analysis and began by familiarizing themselves with the dataset through listening to the recorded focus groups rereading the data and transcript checking the coding stage involved tagging or labelling the data in the manner described above using nvivo version 12 the codes and data extracts were then collated for initial generation of themes cw identified candidate themes from the data and reviewed the themes against the dataset at this stage ya joined the analytic process to collaboratively sensecheck the themes against the data and provide potential alternative interpretations of the data from their perspective as a clinician researcher the themes then underwent further refinement in conjunction with the wider research team including indigenous and nonindigenous team members during the writing process findings twentyfour children young people and parentscaregivers participated in the study we identified three crosscutting themes i am more than a number seeing patients as people in safe hands data as power and what are your intentions with my data consent as an active relationship illustrative data excerpts are presented below and participant quotations have been attributed by ethnicity and participant type square brackets enclose words intended to clarify meaning or provide a brief explanation theme 1 i am more than a number seeing patients as people children and young people were clear in their desire to be seen as more than a number they described their health information and data in relation to stories about their health both with respect to their current illnesses and conditions health indicators and health behaviours and what has happened in the past health data is about knowing information about your health story and problem young person b male māori information that is linked to you and that is about you like maybe like what your health your status what your blood type is all about that child d male māori these examples of health data make up each childs story which would change over time indicating that their health story was ongoing evolving and still being written participants in all groups emphasized that their health story was about being more than a number adult participants discussed how their data represented a real person behind the numbers that data did not tell the full picture about an individual and that this might pose challenges for data linkage in the future this was especially important if the data was perceived to be racialized which might lead to further stigma one parent described how they believed that pooled data did not fully represent them as a person in the same way that information learned in a oneonone conversation might this excerpt highlights two important points about the limited predictive potential of linked datasets firstly it echoes the idea that data points do not represent a whole person secondly it points to challenges with accurate data collection in the health system where māori are often undercounted teenage participants echoed the concern about the predictive potential of data linkage while they were more ambivalent towards data linkage in general with one participant stating that if its anonymous i probably wouldnt mind and another referring to prediction modelling i dont think thats right i reckon the future cant tell itself young person c male nz european their discussion highlighted that aggregated and linked data could diminish the health story and context of the individual especially if data from a person with similar demographic characteristics was being used to represent a collective health story they likened it to someone profiling them before they met them they assume things you like without even knowing you young person a female māori judging a book by its cover young person b male māori theme 2 in safe hands data as power data sovereignty was discussed among participants with regards to the relationships between power ownership access and control of data when asked directly who does your childs data belong to parents and caregivers felt strongly that they and their child had ownership of their childs health data that it was part of them and that they and their child should determine who should be able to access it and use it children and young people tended to attribute multiple ownership of their health data according to who would take care of themto themselves their parents their wider whānau and occasionally health professionals when asked who should own hemis health information one child offered whānau because they say its his mum or yeah she has to know really because shes halfly in charge of him because she looks after him she does stuff with him and she looks out for him like parents look out for you child a female māori later in the discussion another child centred the role of hemi himself child b it should mostly be him hemi interviewer yeah why is that child b because its his not his mums or anyone elses there was more uncertainty around the role of health professionals with a contrast between concepts of permission to use data versus assumed good intentions as demonstrated in the following exchange between two teenage participants young person b you own your data… young person d in a way… young person b the doctors… only you have permission young person d well they have permission anyway young person b well you still own it nobody else apart from the doctor who owns at least half of it probably mostly to help us all so yeah … despite this uncertainty child and teenage participants agreed that health professionals should ask you to use it its like lending it young person a female māori the perceived safety of the data was an important consideration for whānau when considering data sharing and potential data linkage this did not refer to data security but rather data caretakingwho was responsible for looking after their data and ensuring it was used in a respectful manner for example young people cited a lack of trust in the institutions linking the data as a potential barrier for some people being willing to share their data …you cant confirm the future until its happened some of those things might not happen i probably wouldnt mind data linkage too much but maybe someone who didnt trust the government that much because ofi dont know why somebody wouldnt trust the government but people dont so yeah young person d male nz european this was echoed in discussions around specific clinical encounters where patientclinician trust was paramount for active participation participants acknowledged it would determine whether they freely shared their own health information or not for example one parent likened their willingness to consent for data sharing and linkage to their willingness to engage actively in clinical encounters i know were all human at the end of the day but that really sort of triggers in your brain like okay well were just going to get the pamol paracetamol and leave or were actually going to stay and ask more questions and get more information parent d female māori another parent commented that a lack of trust and care would impede their willingness and ability to consent for data sharing stating they would not just withhold information not even bother i literally dont engage notably data sovereignty and ownership was innately tied to parentscaregivers feeling able to access their own and their childs data when required and that this was part of families being able to be active and safe participants in their health journeys we dont know about that medical side of it unless they actually start sharing the information with us parent f male nz european selfor whānauaccess to data was raised as a challenge to ideas of data sharing and linkage for the benefit of wider society how could participants feel comfortable with data sharing and linkage when they felt they could not access their own data themselves in this way data sovereigntyincluding ownership access and controlwas equated with power and trust in health professionals institutions and the state was key to whānau feeling comfortable with sharing access to their data theme three what are your intentions with my data consent as an active relationship participant discussions highlighted the importance families placed on ongoing consent discussions between themselves and their clinicians they emphasized the benefits of data sharing to help other children and families with similar conditions with the caveat that consent for sharing remained a central aspect of the clinical relationship australia and everything with daughter parent f and england parent h and england parent f weve always had consent forms parent h paediatrician has always asked us for consent parent h our daughters data is being shared in in this way consent discussions could be empowering experiences for families allowing them to be active participants in their own health journeys while also helping others yeah its a big thing like it is quite important research that we have to think about who we are giving it to yeah but they are using it for good things for him so thats all that matters parent a female māori however the intention behind data sharing or linkage and being fully informed of any changes was also important for children and families one child remarked child g data sharing can be kind of good and be kind of bad sometimes interviewer how do you reckon its kind of good child g because you are sharing it to the right people but sometimes can be shared to the wrong people and then you can get in trouble similarly the parent below emphasizes the importance of discriminate sharingknowing who the data was being shared with for what purposeand understanding how it would benefit their child likewise parentscaregivers queried the need for renewed consent if the original intention for the data sharing had changed rather than treating consent for data sharing or linkage as a onetime transaction one parent stated i think if a new research company is coming in and wanting the same information that i have previously given consent for i would want to know who and what again because i want to know where your security lies just because i gave it twenty years ago or five years ago doesnt mean i am okay with it now because it could have been misused before so it would continuously be requested each time you go to pull it because i want to know what youre using it for i want to know how its going to be presented parent c female māori all hypothetical discussions of data sharing and linkage were contingent on trust between the participant and the health professional highlighting that a trusting relationship within the framework of informed consent can facilitate open data sharing this was evident even in the child focus groups where childlike ingenuous consideration of the concepts at hand was predicated on a trusting environment where the range of characters in the childs life were helpful and had their best interests at heart the active consent relationshipif done wellmay be an empowering healing relationship within the health system and provide safe opportunities for data sharing and linkage discussion our study identified three crosscutting themes that underpin how children young people and their parentscaregivers view child health data use first health data was embodied as a health story that represented a childs unique journey and being more than just a number second there was a sense of data ownership and that any data linkage depended on it being in safe hands finally informed consent for child data use was conceived as an active relationship this dynamic relationship must be revisited if intentions for data use change and when children reach an age where they can consent for themselves notably while the focus groups were not framed in terms of child rights discussion of fairness based on moral rights to an open future arose in relation to several topics including protecting against continued production of racialized datasets failure to attain adequate consent prior to linkage building and retaining trust and reducing misuses of health data that can inadvertently exacerbate health inequities in the context of large datasets it appears that informed consent no longer matches the way that child health data is used in the face of network growth and fresh opportunities for data linkage indeed in large linked datasets people can be included with no direct contact required with informed consent being impracticable often individuals have limited choice as to whether they provide information that ends up in integrated data sets such as the idi as it is routinely collected in essential services in nz data cannot currently be withdrawn from the idi as a result a child cannot retrospectively withdraw their parentscaregivers proxy consent when they reach an age where they can consent for themselves this means that parental consent on behalf of the child essentially commits children to a lifetime of potentially unconsented data retention and linkage additionally linkage of deidentified data as in the idi currently sits outside of standard ethical procedures as low risk observational studies removing a usual layer of ethical scrutiny the dynamic process between children their parentscaregivers and their burgeoning autonomy highlights the need for an active relationship between the data holder and the data subject at a basic level when obtaining consent there should be a clearly identified specific purpose for the use of data and this should include disclosure of possible future intentions it may still be possible to reap the benefits of data storage and linkage while also respecting the childs moral right to an open future by providing children with the ability optout and withdraw consent for use of their data while this may be suitable for large biobanking projects and other longitudinal studies it may be more difficult for studies on shorter timeframes and tighter budgets this will pose logistical challenges regarding reidentification of deidentified data and retaining sufficient contact information for families especially among more transient populations and over time when young people grow up and become autonomous adults previous and ongoing research has been particularly concerned with questions of data governance when data is repurposed in future contexts a 2018 study of a publicprivate partnership between a national health service trust in the uk and an artificial intelligence venture explored how the contextual integrity of data collected for use in one context can be violated when it is used in another context that is not bound by the same norms of appropriateness the datagov study offers a coproduced peoplecentred model for involving patients and the public in decisionmaking processes about health data usage and sharing in the context of rare diseases micheli and colleagues suggest that as well as discussion of principles guiding data sharing and use and who can access and participate in data governance it is critical that questions of value production and how value is redistributed are also considered this is central to the consideration of both child and māori health data and the reproduction of outcomes as a result of data linkage to ensure that children retain their right to an open future while participants indicated notions of data ownership this was a nuanced concept that aligned more closely with ideas of stewardship or caretaking on the part of health professionals or researchers than transfers of proprietary rights our data and previous studies suggest that trustat multiple levels within the health and other governmentdelivered systemsmay facilitate data sharing past research has demonstrated that negative experiences in the health system may affect future engagement in other areas our data suggests that data sharing depends on a trusted data steward or caretaker the 2021 nz medical council statement on informed consent asserts that this should be an interactive process not a oneoff event institutional trust will also be essential if nz wants to benefit from integrated datasets previous key concerns for māori regarding offshoring nz data was the crowns capability to act as good stewards of māori data due to several reasons including lack of transparency unilateral decisionmaking that excludes māori interests and a poor track record poor data stewardship including regarding storage usage and linkage has the potential to damage māoricrown relationships and erode trust nzs current health and disability system reform includes a focus on developing digital infrastructure to improve health service delivery this provides an opportunity to also further develop a code of ethics governing child health data use requiring fair and informed consent for data retention for further purposes such as linkage a key strength of this study was the high proportion of māori participants and the prioritization of child voice limitations included the smaller numbers of teenage participants due to scheduling constraints around school term time which may have limited our ability to draw firm conclusions from this group future research should prioritize inclusion of young people views especially as the digital landscape rapidly changes similarly only one parentcaregiver was male with a high number of female participants overall which may limit transferability to other settings with a greater proportion of male primary caregivers one parent focus group included comparatively fewer participants than the other though there were no considerable differences in views held by the two groups additionally all participants were already engaged in the same communitybased outpatient service and might have held different views from their peers who were less engaged in the health system this study specifically focuses on the views of participants of the health system noting that these may not align with jurisdictional ethical and legislative requirements or practice one of the central principles of kaupapa māori research is whānaucentredness a whānaucentred approach focuses on improving the wellbeing of whānau and addressing individual needs within a whānau context rather than focusing on individual family members and singleissue problems issues relating to child health data therefore need to be considered in this context of interconnectedness additionally while the main focus group concepts were discussed in the context of child health data many of the findings have applicability to health data relating to people of all ages while views across age groups did not substantially differ the conceptual understanding and interpretation of potential consequences of data linkage was indeed different according to age group this has implications in terms of how decisionmaking processes concerning data sharing and linkage should be undertaken while children and teenagers should indeed be involved in decisionmaking this information should be tailored to support this process at different levels of understanding conclusion managing data integration on a large scale requires an equivalent level of responsibility our study suggests that children and their families want to be seen as more than a number and that data ownership is a complex issue that warrants further discussion current consent processes require further deliberation especially regarding consent for children when they become adults and the potential need for reidentification of data in the case of withdrawal of consent genuine and meaningful informed consent is key but how this works in practice with large integrated datasets is questionable future research could include how we align participant views with practice how dynamic or active consent could work in clinical practice and how this relates to legislative requirements digital health applications provide an opportunity to ask for consent with each interaction and document this as well as ensure continued support for explicit data collection and potential linkage the importance of addressing these issues should not be underestimated given the imperative for trust within the health relationship and the data revolution that is occurring without a strong ethical and child rights approach to issues of child health data management and dataextractive process such as data linkage and subsequent reporting of data we risk exacerbating health inequities and failing those in society who do not always have the ability to advocate for themselves data availability the study data cannot be made available in a public repository due to the strict conditions of the ethics approval supplementary material supplementary material is available at health promotion international online ethical approval the study was granted ethical approval by the nz central health and disability ethics committee

while there is potential for societal benefit from linkage and integration of large datasets there are gaps in our understanding of the implications for children and young people and limited inclusion of their views within this discourse we aimed to understand the views and expectations of children young people and their parentscaregivers in aotearoa new zealand regarding child health data storage linkage and consent for use this qualitative study included 24 māori and nonmāori children young people and their families across five focus groups recruited from a communitybased health service a mixed māori and nonmāori research team facilitated participant recruitment and data collection child adolescent and parentcaregiver groups were held separately sessions were audiorecorded and the verbatim transcripts were analysed thematically we identified three themes i i am more than a number seeing patients as people ii in safe hands data as power and iii what are your intentions with my data consent as an active relationship a key challenge was the reductive and stigmatizing potential of data integration for minoritised groups hypothetical discussions of data sharing and linkage were contingent on trust between the participant and the health professional with negotiated data ownership consent was conceived as an active relationship needing renewal and renegotiation as children reached adulthood current consent processes for ongoing use of child data require further deliberation without a strong ethical and child rightsbased approach to issues of child health data management consent and linkage we risk exacerbating health inequities and experiences of breach of trust

introduction the declaration of caracas in 1990 represented a marked shift in mental health policy in latin america whereby a number of mental health reforms were implemented in different countries of this region 1 each of these mental health reforms has three main objectives 1 to anchor mental health within primary care 2 to develop community mental health services and 3 to reduce the stigma associated with mental illness 2 examples of successful models are now found in brazil panama and chile 3 however a recent evaluation of mental health services in latin america reported that stigma is still an important barrier to recovery in people with mental illness 4 stigma toward individuals with mental disorders has been studied at length in europe north america africa and asia for almost half a century 5 in the case of latin america and the caribbean while the past decade has been marked by a significant increase in information on stigma toward mental illness 6 7 8 the last review to analyze aspects of stigma at the regional level was published a decade ago 9 link et al 10 have postulated modified labeling theory which articulates the process by which stigmatization of mental illness occurs labeled individuals in anticipation of stigmatizing responses from society may adopt harmful coping mechanisms leading to worse psychological symptoms diminished social networks and reduced life opportunities additionally theorists have long identified that culture is a key factor that shapes stigma 11 according to yang et al 11 each local social group engages in a set of fundamental daily activities that matter most and stigma affects those activities and capacities most profoundly stigma is thus viewed as a fundamentally moral experience for individuals threatening that which is most at stake in local worlds and manifested in the daily practices and social activities of its members therefore cultural factors may be viewed as key in determining the fundamental capacities that shape stigmatization among different populations however the study of stigma toward people with mental illness has focused on the development of standardized assessments that do not incorporate cultural elements 12 indeed in a recent systematic review yang et al found that the vast majority of studies analyzed utilized adaptations of existing westerndeveloped stigma measures 13 culture stigma and latin america the concepts of latin america or latino are used here to refer to people from different geographical areas within the americas this includes mexico countries from central america south america and the caribbean understandably the latin american population is heterogeneous 14 notwithstanding latinos have several cultural features and values in common 15 while standardized approaches to stigma offer notable methodological advantages 12 we believe that a full understanding of the shared cultural aspects of stigma in the latino population should consider cultural influences within this region therefore we propose a framework of key cultural orientations to interpret stigma that have been previously identified in latin america familismo compadrazgo machismo and dignidad y respeto 14 the concept of familismo encompasses three dimensions 1 familial obligations which entails providing material and emotional support for the family 2 support from family which is the expectation that family members should support and help one another and 3 family as reference which connotes the expectation that important decisions are made with the best interest of the entire family unit taken as the primary consideration 16 machismo refers to a patriarchal structure of society whereby the man has the main role as protector and provider for his family 15 the main role for women in contrast is to become a holy and pure mother dedicated to caring for her husband children and family therefore many communities within latin america have been found to reproduce authoritarian relationships between genders 15 compadrazgo is a formal friendliness which values warm close and caring relationships even within professional situations 17 which become strengthened only when individuals are able to offer and to reciprocally exchange favors finally dignidad y respeto is a value emphasizing the intrinsic worth of all individuals and promoting equality empathy and connection in ones relationships this cultural value is associated with a hierarchy of deference in which elders and parents are accorded the highest status and merit more respect than youths 14 this value also may be moderated by other values such as machismo whereby men may command more dignity and respect than women 14 within this context our review was motivated by the lack of an uptodate review considering that research in this area has made great strides in the past 10 years the establishment of the community psychiatry model in latin america and the caribbean in which the fight against stigma is a growing priority and finally the possible contribution to the generation of evidencebased antistigma strategies from this region taking into account that some characteristic features from latino communities have been identified as potential facilitators for decreasing stigma in people with mental illness 18 the objective of this paper was to conduct a systematic review of studies about all types of stigma toward mental illness in latin america and the caribbean in this review we assume that such differences may represent in part universal forms of stigma as well as represent cultural expressions of stigma toward mental illness in this region methods literature search and article selection strategy we conducted a systematic search of scientific papers in the pubmed medline ebsco scielo lilacs imbiomed and bireme databases one key strength of our strategy is that unlike other literature reviews we included spanishand portugueselanguage search engines in our strategies the search included articles published from january 2002 to july 2014 the keywords included were stigma mental illness latin america culture and literature review these terms were combined to yield a more precise search strategy titles and abstracts were reviewed independently by authors fm ss and tt documents that did not meet the inclusion criteria were discarded each disagreement was resolved via discussion with the research coordinator furthermore additional articles of interest were identified by a hand search of the reference sections of articles retrieved by the electronic database search the reviewed articles were organized and characterized as follows the country where each study took place was noted along with the sample size and makeup and the aims and methods of the study the stigma type addressed in each study was classified as a public stigma b selfstigma c family stigma or d institutional stigma another category multiple stigma was used to classify studies that addressed more than one type of stigma finally the main results of each study were summarized inclusion criteria articles were included in this review if they 1 were studies of latin american and caribbean populations 2 reported primary research published in peerreviewed scientific journals 3 focused on evaluating stigma toward adults andor children with a diagnosis of mental disorder or their relatives 4 included quantitative or qualitative measures of public stigma family stigma institutional stigma andor consumer stigma and 5 were written in english spanish or portuguese results a systematic search of the databases yielded 1221 documents of these 1161 papers were excluded mainly due to repetition or because these studies were not focused on issues related to mental health for the final review of a subtotal of 60 articles 43 additional articles were excluded 20 because their primary aim was not the assessment of stigma nine theoretical reviews six focused on stigma associated with the media four which looked at latin american immigrants from other countries and four others that reported different aspects of data from a single study thus 26 articles met the selection criteria and were included in this review arranged by the categories introduced earlier the languages in which the documents were written from most to least frequent were english spanish and portuguese most of the research was carried out in mexico brazil and argentina remaining studies were conducted in jamaica colombia peru and chile the most evaluated type of stigma was public stigma followed by consumer stigma in turn studies on family stigma were infrequent we did not locate any studies regarding institutional stigma in terms of methodology 17 studies were quantitative eight were qualitative and one integrated both methodological designs the quantitative studies used questionnaires developed by the authors or adaptations of instruments designed in the united states united kingdom canada or other anglosaxon countries with respect to qualitative studies the principal information collection strategies were structured interviews semistructured interviews focus groups and ethnographic interviews finally we organized our results in table 2 by type of stigma sample and location aims of study methods and main results public stigma the studies identified negative prejudices toward people with mental illness which have been commonly identified in western european contexts such as being categorized as dangerous and violent leiderman et al 7 interviewed 1254 community members from argentina and reported that 699 of the surveyed individuals believed that people with schizophrenia show bizarre or inadequate behavior community respondents also reported harboring stereotypes about the potential chronicity of mental disorders similarly peluso blay 23 determined that attributing biological reasons to the causation of mental disorders was significantly associated with an increased perception of danger in a sample of 500 respondents from the general population finally in mexico roblesgarcı ´a et al 25 evaluated the public conception of aggressiveness about schizophrenia among 1038 community members more than 545 of the respondents believed that the person described in the vignette would eventually behave aggressively verbal aggression was the most common belief men considered nonpsychiatric interventions to treat mental disorders more often on the other hand negative attitudes from mental health professionals were identified in most 21 but not all of the reports 20 in a study with a sample of 1414 psychiatrists loch et al 8 reported that the respondents endorsed negative attitudes and social distance toward people with schizophrenia nevertheless psychiatrists who worked in a university psychiatric hospital reported less social distance than colleagues who did not work in a psychiatric hospital setting in a subsequent study the same authors compared psychiatrists responses and responses from 1015 individuals of the general population finding that the psychiatrists reported lower social distance scores compared with members of the general population 37 lastly fresa ´n et al 24 evaluated the attitudes of a group of female psychology students through the opinions about mental illnessomi they reported that 591 of the students felt that the person described in the clinical case vignette could be aggressive in some way the students who perceived the person described in the omim cpa 591 of the students felt that the person described in the clinical case vignette could be aggressive in some waythe students who perceived the person described in the vignette as aggressive exhibited higher scores in areas of restriction and higher pessimistic prediction in the total omim score robles garcı ´a25 vignette as aggressive also exhibited higher scores in areas of social restriction and higher pessimistic prediction of recovery in the same line in a sample of employers results revealed a devaluation of mentally ill individuals labor skills 68 of employers thought that people with schizophrenia performed even simple tasks poorly 38 regarding local expressions of stigma des courtis et al 20 carried out a study with a sample of mental health professionals from brazil and switzerland participants in switzerland compared with those from brazil showed greater social distance and stigmatizing attitudes toward people with mental illness brazilian mental health professionals in turn showed more positive attitudes toward community psychiatry gibson et al 6 showed that 7982 of respondents in a national survey in jamaica exhibited positive attitudes and behavior toward people with mental illness attitudes of compassion care love and concern were commonly reported delevati palazzo 19 evaluated the attitudes of 536 employers toward people with mental disorders in brazil and participating employers scored highest in benevolence and authoritarianism on the omim moreover fresan et al 22 interviewed 258 community members concerning their perceptions of aggressiveness relating to people with a diagnosis of schizophrenia overall 539 of the participants declared that the person described in the vignette was not aggressive or dangerous only 233 of the sample especially women recommended psychopharmacology as the first line of treatment finally in a qualitative study conducted in jamaica hickling et al 26 identified that mental health consumers family members and community members had more positive attitudes toward mental illness when the community mental health services were integrated into the primary care network similarly martin et al 27 in an ethnographic study that described the living conditions and sociability among people with severe mental disorders living in slums in brazil reported that the impaired social functioning characteristic of individuals with psychotic disorders was exacerbated in this vulnerable environment however most of the community members expressed tolerance pity compassion support and solidarity toward slum residents with mental health problems consumer stigma the main results showed that consumers commonly experience functional impairment and social exclusion 2834 for instance va ´zquez et al 29 evaluated the association between perceived stigma and functionality in 241 consumers with bipolar disorder from brazil colombia and argentina functional impairment was significantly associated with perceived stigma furthermore a chilean study of 250 consumers only reported that 133 were working in competitive situations and most were not receiving any welfare benefits 38 uribe restrepo 39 carried out indepth interviews with 52 consumers and 18 relatives from colombia consumers described stigma as rejection ignorance and derogatory language which led to low selfesteem lack of autonomy and freedom and feelings of social exclusion and being different in the same line arau ´jo et al 33 in an ethnographic study found that stigma manifested itself through discrimination rejection difference and isolation the consumers also reported fear of being excluded from employment and other social spaces if they disclosed their psychiatric diagnosis 32 a comparison regarding perceived stigma between argentina and canada was done by mileva et al 30 the authors interviewed 392 consumers using the stigma experiences scale and stigma impact scale over 50 of respondents believed that the average person is afraid of individuals with a mental illness and that stigma associated with mental illness has affected their quality of life and their selfesteem ses and sis scores were significantly different between the two populations with the argentinean population scoring lower on both the ses and lower on the sis as well the authors stated that family dynamics and emotional closeness with family members might differ culturally between the two groups and this could become in a protective factor for argentinean people concerning internalized stigma and discrimination morarios et al 31 applied the internalized stigma of mental illness and the scale of perceived illness consequences to 59 consumers in mexico city more than 90 of respondents had experienced rejection at least once in their lives family was identified as the principal source of discrimination and behaviors such as underestimation of abilities or hostile attitudes from relatives and extended family were frequently reported family stigma studies with relatives focused mostly on stigma from the family not stigma toward the family research with relatives of people with mental disorders highlighted their limited knowledge about mental illness prior to their family members diagnosis 38 upon learning the psychiatric diagnosis families often experienced frustration denial and grief 39 nonetheless in a general population study in jamaica gibson at al 6 found that people who had relatives with a mental disorder were less likely than others to avoid individuals with mental illness family members were also slightly more likely to be friendly and tended to socialize with mental health consumers more in terms of stigma toward the family lolich et al 35 investigated the characteristics of 175 consumers with bipolar disorder with and without psychotic symptoms at onset and found that a greater proportion of consumers with psychosis thought that their family had been stigmatized due to their mental illness in comparison to bipolar patients without psychotic symptoms at onset regarding local manifestations of stigma in latin america loch 36 interviewed 169 consumers and inquired about rehospitalization rates of people with psychosis and bipolar disorder family members agreement with the consumers ongoing hospitalization was a predictor of readmission readmitted persons were often classified as dangerous and unhealthy by their own families multiple stigma one study by loch et al 37 that considered a sample of 1051 community members from brazil who were interviewed by telephone identified four stigma profiles no stigma individuals labelers discriminators and unobtrusive stigma individuals people with the labeler profile more often had familial contact with mental illness and paradoxically scored higher on social distance the authors concluded that these findings are likely determined by specific cultural characteristics of latin american families in a qualitative multisite study that interviewed 146 people with schizophrenia and 80 caregivers wagner et al 40 found that stigma and discrimination was an omnipresent existential theme some participants from latin america especially women reported several pressures from their families to accomplish the typical role of woman within a family but they were not able to obtain a romantic partner or rent a house on their own finally in mexico morarios et al 41 carried out adaptation and validation of several instruments about stigma the internalized stigma of mental illness inventory the opinions about mental illness scale and the devaluationdiscrimination scale this study consisted of semistructured interviews and focus groups with eight health professionals 15 relatives four community members and two consumers the instruments showed good levels of understanding acceptability relevance and semantic integrity after analysis several new items were proposed by participants for addition to each instrument many of the proposed items were related to gender issues or family discussion the main purpose of this article was to conduct a systematic review of the literature about mental illness stigma in latin america and the caribbean many of the results reported in this region were similar to those reported in studies carried out in other parts of the world for example regarding public stigma stereotypes and prejudices associated to violence unpredictability and disability are common in many countries around the world 35 in a multisite study with representative national samples of adults from 16 countries pescosolido et al 42 found the highest levels of stigmatizing responses relating to child care providers potential for violence unpredictability marrying and teaching children thornicroft 43 stressed that the majority of people with mental illness worldwide suffer stigma and discrimination in multiple aspects of their life work housing access to health services or the legal system etc concerning selfstigma experiences of rejection isolation low selfesteem and hope are frequently reported by users of mental health services for instance corrigan et al 44 tested a model of selfstigma with 85 people with schizophrenia in the united states and found a significant association between stigma and lowered selfesteem selfefficacy and hope other studies from western european countries have also confirmed an association between selfstigma and higher rates of hospitalizations 4546 finally negative attitudes and discrimination are usually experienced by family members 47 as was established in some of the studies included in this review in the same line caregiver burden sleep disorders low social support and impaired quality of life among caregivers are usually reported in the literature 48 however some important results of the studies included in this review differed from those reported in western european settings for instance regarding public stigma the results of the jamaican studies conducted by hickling et al 26 and gibson et al 6 indicated that if mental health services are integrated into the primary care system stigma in community members may decrease while benevolence and compassion toward individuals with a mental illness could grow one explanation for these findings arises from the deinstitutionalization movement and development of a community mental health system in jamaica 49 the authors pointed out that this process considered several qualitative assessments of the population addressing particular cultural aspects of caribbean countries indeed in comparison with another report 50 jamaican people began to show positive attitudes toward mental illness as early as the 1970s with special mental health community work carried out via psychohistoriography and cultural therapy both approaches highlight the history knowledge and identities of specific communities 49 attitudes of compassion and benevolence associated with latin american culture have been also identified in other studies for instance silva de crane and spielberger 51 in a sample of 309 anglo hispanic american and black american college students found the highest omim benevolence scores in hispanic people this could be explained if one relates benevolence and compassion to the latin american cultural orientations of compadrazgo or dignidad y respeto some authors have linked this cultural phenomenon to social capital within hispanic groups rooted in the power of family and community which can be a protective factor for stigma 18 in general results of brazilian studies about stigma from health care professionals showed negative attitudes toward individuals with a mental illness nevertheless compared with professionals from switzerland 20 and the general population 37 brazilian healthcare professionals endorsed less social distance and more positive attitudes it is worth noting that perspectives on mental health problems from preindustrialized societies generally include a religious dimension that might prevent the negative effect of stigmatization 52 in brazil religious beliefs about mental illness are common and christianity is the main religion which may serve to ameliorate mental illness stigma in this context in a study conducted by paro et al 53 in a sample of 319 medical students the brazilian version of the jefferson scale of empathy was adapted and results showed that the first factor to emerge was a compassionate care component which the authors linked to the humane care perspective promoted by christian religions additionally several of the findings described throughout this manuscript relate with gender issues 4041 machismo and dignidad y respeto toward men many latin american societies are traditional and influenced by the legacy of colonialism and christianity 16 which determined an active and authoritarian role for men and passive and secondary social roles for women who must devote themselves to household chores and duties as reported by wagner et al 40 therefore women may be more stigmatized if they lose their capacity to fulfill family roles and men may hide their psychiatric diagnosis and refuse to attend mental health services to avoid losing status and the ability to work 54 finally we obtained particularly important findings related to family stigma mileva et al 30 reported findings concerning the potential protective role of family in argentina from their point of view family members friends and relatives provide emotional assistance to family members who have a diagnosis of mental illness this makes sense if one conceptualizes latin families as groups with close and meaningful relationships among their members 55 however some findings went in the opposite direction 3137 according to consumers interviewed by morarios 31 family reactions and behaviors might be the main source of discrimination for people with mental disabilities additionally loch et al 36 after evaluating a sample of relatives found that more contact entailed greater social distance between caregivers from a cultural perspective these results may be contextualized within the framework of the value known as familismo if one considers people with mental disorders to be viewed as persons that may fail to meet their family obligations they may eventually become a burden on their relatives and be subject to highly stigmatizing attitudes 55 furthermore our findings in regards to the role of women with mental illness within the family are interesting and have a clear connection with machismo as mentioned above namely women reported they could be homemakers and take care of their siblings or parents but had difficulty becoming mothers or moving to homes of their own 40 this review has several potential limitations first our search strategy did not specifically include terms corresponding to culturespecific descriptors of distress and thus may have missed studies addressing the cultural expression of stigma toward mental illness in this region similarly by using broad search terms such as culture or latin america for our database search we may have missed studies on specific regions or ethnicities additionally we incorporated diverse studies with different conceptual and methodological frameworks which made them difficult to synthesize and compare most quantitative studies in our review used small convenience samples so that findings were specific to certain subgroups and may not apply to all group members from one country province or region finally the choice of stigma measure also varied from study to study thus potentially undermining identification of cogent culturally specific stigma constructs considering the importance of sociocultural characteristics in stigma we recommend developing or validating instruments about stigma that consider its cultural aspects we believe that a useful and interesting method to adapt and validate culturespecific stigma instruments has been proposed by yang et al 11 these authors suggest administering quantitatively based stigma instruments to qualitatively collect data on stigma this approach allows for the development of culturespecific measurement modules which take into account the sociocultural characteristics of the local community in which the instrument is applied and which may lead to better prediction of outcomes of interest the results discussed in this review in terms of the cultural aspects of different actors included in the process of stigma could contribute to the creation and implementation of antistigma interventions in latin america to date no published results about antistigma interventions employed in the region have been published 56 rosen 18 has stated that some factors present in developing countries could contribute to a favorable implementation of antistigma projects such as a retention of social integration b social support from community and solidarity c the power of family and an extended kinship or communal network and d a higher threshold for detecting madness or for labeling a person as mad all of these may facilitate implementation of antistigma interventions in latin america in light of the above we conclude that stigma in addition to having powerful forms that are shared across cultures is expressed with important local differences that have meaning in particular latin american contexts thus an effective approach in the region will require concerted global investment both from powerful stakeholders and from the community at large as well as the incorporation of dimensions in future stigma assessments and interventions development of these new approaches must include suitable strategies to incorporate cultural features relevant to each community as noted above the influence of gender issues the power of family and its dual role as a protective but also discriminatory agent and the attitudes of benevolence and solidarity observed among community members should be considered for future antistigma interventions in latin america disclosure the authors report no conflicts of interest rev bras psiquiatr 201638 stigma toward mental illness

objective stigma toward individuals with mental disorders has been studied extensively in the case of latin america and the caribbean the past decade has been marked by a significant increase in information on stigma toward mental illness but these findings have yet to be applied to mental health services in latin america the objective of this study was to conduct a systematic review of studies relating to stigma toward mental illness in latin america and the caribbean the authors specifically considered differences in this region as compared with manifestations reported in western european countries methods a systematic search of scientific papers was conducted in the pubmed medline ebsco scielo lilacs imbiomed and bireme databases the search included articles published from 2002 to 2014 results twentysix studies from seven countries in latin america and the caribbean were evaluated and arranged into the following categories public stigma consumer stigma family stigma and multiple stigmaswe identified some results similar to those reported in highincome settings however some noteworthy findings concerning public and family stigma differed from those reported in western european countries interventions designed to reduce mental illnessrelated stigma in this region may benefit from considering cultural dynamics exhibited by the latino population

t his paper appeals to the afrocommunitarian conceptions of solidarity to think critically about the duty to vaccinate barbara prainsack and alena buyx 1 describe solidarity as enacted commitment to carry the costs of assisting others with whom a person or persons recognise similarity in a relevant aspect in subsaharan africa one concrete way africans have enacted this commitment to carry cost is exemplified by the phenomenon of black tax common in southern africa whereby individuals who are welloff in a family help their indigent relatives there are at least two reasons to reflect on the imports of solidarity for the duty to vaccinate first some scholars have suggested that covid19 vaccine mandates may be justified based on the principle of solidarity 23 yet they are hardly clear about the formulation of solidarity that supports this view this is a critical gap second global covid19 vaccination remains a challenge more than 50 countries have been unable to vaccinate at least 10 of their population 4 despite rna vaccines from moderna and pfizerbiontech being freely available in most countries and some studies 45 demonstrating their safety and their effectiveness in mitigating severe covid19 symptoms and death this includes african countries like egypt and nigeria and lowincome countries like iraq and afghanistan only about 15 african countries have fully vaccinated at least 10 of their population while only 44 of africans are fully vaccinated 4 in south africa the country with the largest number of covid19 cases and deaths among african countries as of september 27 2021 the average daily covid19 cases remain around 1700 and daily deaths around 200 with most infections and deaths occurring in urban and largely populated areas in gauteng western cape and kwazulu natal regions 67 yet only about 14 of the population has been fully vaccinated these statistics on vaccination in africa should be interpreted considering the age structure of the population but this is outside of the scope of this paper evidently some factors are responsible for the low vaccination in african countries including a shortage of doses nonetheless the reluctance to vaccinate has been observed even where doses are available 8 in fact vaccine hesitancy is one of the top ten global health threats 9 vaccination hesitancy threatens everyone and undermines the global covid19 pandemic response and quest to limit and stop the spread of the virus the global community should not spare any tool for overcoming hesitancy any longstanding tradition or culsolidarity afrocommunitarianism and covid19 vaccination ture could offer lessons on the human condition africans have cooperated for a long time and formed solidarity with each other if the principle of solidarity grounded in the african way of being or experiencing the world can help to scale up covid19 vaccination this ought to be explored since no one is safe until everyone is safe in this paper we argue that the principle of solidarity grounded in afrocommunitarianism implies we ought to vaccinate to further foster vaccine uptake and prevent covid19 vaccinepreventable complications and deaths to justify this thesis in the first section a we highlight some aspects of this principle in african philosophynamely altruism reciprocity and collective responsibility and b outline their moral implications for the duty to take safe and effective vaccines though we focus mainly on the duty to vaccinate we do not suggest that vaccination is the only means of preventing complications associated with covid19 our analysis equally applies to the duty to socially distance wear facemasks or adhere to covid19 mitigation protocols in the second section we address the objections to our stances on vaccine mandates mandates are critical for upscaling vaccine intake lifting restrictive measures and limiting complications associated with covid19 210 we demonstrate that despite attractive aspects of solidarity in african writings favouring voluntary vaccination it has considerable implications for upscaling covid19 vaccination following this we address the objection that the norms we describe do not address the real reasons for vaccination hesitancy understanding and addressing these reasons is critical for increasing covid19 vaccination we contend that though these reasons include a complex combination of confidence complacency and convenience confidence or mistrust in the vaccines appears to be closely associated with reluctance to vaccinate we then showed how the african view of solidarity implies that scientists should use scientific data and social media to build trust and in what ways they can do so finally we address the objection that the african view of solidarity has no practical relevance for public health ethics or decisions since the motivation for forming solidary groups appears to be essentially selfinterested we demonstrate how this is not problematic since positive reciprocity rather than negative reciprocity tends to be encouraged in afrocommunitarianism this paper is different from other studies which focus on understanding the factors affecting covid19 vaccine uptake it is equally different from other studies that appeal to western approaches like consequentialism to reflect on vaccination contrarily the moral implications for the responsibility to vaccinate grounded in solidarity match moral intuitions dominant in the global south the idea of solidarity is not unique to african thought and is also found in the west and east however the ways of thinking about this concept in african philosophy are based on african modes of being or encountering the world something africans did not learn from others african discussions on solidarity in african writings altruistic service or altruism reciprocity and collective responsibility to promote the flourishing of all members are common themes often associated with this concept these themes do not exhaust the concept itself and a scopingsystematic review is required to map the discussion on solidarity in afrocommunitarianism adequately altruistic service the idea that the normative ideal way of exhibiting solidarity entails altruistic service has been defended by thaddeus metz in metzs 11 opinion to exhibit solidarity entails a commitment to act to make others better people sharing in their failures and successes advancing their selfrealisation for their sake and improving their situation having been deeply aware of the others condition the one who exhibits solidarity is necessarily sympathetic empathetic and sensitive to fail to exhibit solidarity is either to be indifferent exhibit ill will or act in ways that undermine the wellbeing or the good of others 11 the core of thinking about solidarity in this way is responsiveness to others for their sake a likelihood of success and acting to benefit others are crucial to exhibiting solidarity in this way one relevant norm that emerges from this description is that one should act to advance others good for their sake the tremendous support and goodwill given to the university of cape town following the fire incident that left many students stranded and destroyed some of the university structures like the priceless collection of african studies in the jagger reading room is one concrete way this norm was lived out 12 what does altruistic service imply for the duty to vaccinate the pandemic significantly impacted older adults and people of colour for example about 50 of older adults living in the rural communities in the united states are believed to be at a higher risk of covid19related complications and death than urban residents owing to underlying medical conditions fewer health professionals less wellresourced health care facilities and a general lack of intensive care and ventilators 13 equally the covid19 pandemic has further deepened social inequalities and provoked troubling economic crises for societies and individuals in south africa the pandemic had an enormous impact on many individuals who depend on their daily income the lockdown measures imposed by the government to curtail the spread of the virus resulted in income loss for many increasing the number of people on the poverty line 14 the world bank predicted that the situation may worsen with a real possibility that more south africans will be pushed below the poverty line 14 there are many ways to address this problem within this context this way of thinking about solidarity implies we should be responsive to those negatively impacted by the pandemic by vaccinating this will be a way of demonstrating goodwill to those who have been significantly affected and overturning the gross social inequalities created by this pandemic with many people vaccinated governments around the world will be able to lift lockdown measures and begin an economic recovery to allow more people to find jobs and earn an income reciprocity though altruism is one way in which solidarity has been conceptualised in the writings of some african scholars it does not exclude reciprocal obligations whereby individuals in a solidary group are responsive to each other a relevant african maxim here is the right arm washes the left arm and the left arm washes the right arm consider the following remark by julius nyerere 15 in our traditional african society we were individuals within a community we took care of the community and the community took care of us we neither needed nor wished to exploit our fellow men similarly the shona phrases kukura kurerwa and chirere chichazo kurerawo imply that since everyone develops through the contributions of others everyone should also play a role in the growth of others 16 the shona people believe that a community that exhibits solidarity has no orphans no stepsisters stepbrothers or stepmothers it is one in which we are simply sisters or brothers to one another the duty this gives rise to is that ones actions should benefit others because one has been a beneficiary of the others actions this duty excludes circumstances where one lacks the means to reciprocate or where reciprocating reasonably undermines ones existence or threatens ones being this way of thinking about reciprocity is more positive whereby one party in reciprocal relations mostly aims to benefit more than others precisely one way of thinking about solidarity in african philosophy is positive reciprocity such as can be found in the black students response in 1976 to the introduction of afrikaans as the medium of learning in black schools despite threats of arrests and even deaths black students who never knew each other began to group based on their racial identity to counterdefeat racist intentions mabogo more 17 writes about the grouping of black students in the following way this mutual and common comprehension recognition and appreciation of each others destinies and projects by black students constitutes reciprocal relations in such relations the other becomes an instrument not for the negation of the self but for its affirmation the consequence of which is the emergence of group solidarity the implication for covid19 vaccination is that as others contribute towards limiting or mitigating the impact and spread of covid19 through vaccination social distancing wearing facemasks and adhering to covid19 mitigation protocols we ought to support them by doing the same the covid19 pandemic response will be robust and more effective if we complement each others efforts to limit or reduce the virus spread if vaccination can be mandated from the afrocommunitarian perspective solidarity appears to be an inadequate principle to justify this position collective responsibility in african philosophical writings solidarity also tends to entail cooperation among members in ways that imply collective ownership of and responsibility for their destiny requiring one to contribute herhis best effort to realise the groups aspirations and goals the nigerian philosopher segun gbadegesin 18 similarly remarks every member is expected to consider themselves an integral part of the whole and to play an appropriate role towards achieving the good of all while writing about the apartheid atrocities the former chair of the truth and reconciliation commission archbishop desmond tutu 19 also remarks that ubuntu means that in a real sense even the supporters of apartheid were victims of the vicious system which they implemented the humanity of the perpetrator of apartheids atrocities was caught up in that of his victim whether he liked it or not this way of thinking about solidarity is rooted in the belief that human lives are deeply interconnected and intricately bound up with one another as luis mbigi 20 retorts i cannot separate my humanity from the humanity of those around me for barbara nussbaum 21 we are so connected that if you did not sleep well or if you are not having a good day how can i sleep well or have a good day this view sharply contrasts amartya sens 22 capability approach according to which justice or the individuals freedom essentially entails independence from others that is an individual should value the capability to realise his own functionality regardless of the situation of others this african view of solidarity implies that one can only discover his identityfreedom through others the choices and decisions we make impact us all because human reality is interwoven ones own identity is connected both to who others say one is and who all of us are together this is what dion forster 23 calls generous ontology ones shared identity with others or interconnection with them is itself a condition for the possibility of growth one is human to the extent that she can be part of a communal relationship and others can relate with oneself for this reason lekan balogun 24 remarks solidarity involves commitment and work as well as the recognition that even if we do not have the same feeling or the same lives or the same bodies we do live and grow on common groundsin west africa the african motif of the siamese crocodile is commonly used to illustrate this the art depicts two crocodile heads who share a single stomach everything one head eats impacts the others 25 among the igbo people of west africa one could be held responsible for the debts owed by others this way ngozi punishes the perpetrator of a crime and their relatives normatively implying that we are accountable for each other 16 in this way solidarity is grounded in similarity or solidarity among people we recognise our shared identity with the people to whom we exhibit solidarity our participation in the creation of the problem undermining their dignity and how our failure to aid them also affect us covid19 pandemic has revealed that we are not isolated humans when we undermine the wellbeing of others we undermine our wellbeing because we are implicated in one anothers lives this view gives rise to a variety of norms but relevant here is the idea that we have a responsibility and a debt to promote the flourishing of each other within this context by vaccinating since those who do not vaccinate bar any underlying medical conditions that may prevent them from vaccinating put our lives and their own lives as well as our collective capacity to recover from the covid19 pandemic at risk mandatory vaccination and solidarity in this section we address some objections against our position a vaccination enthusiast will be correct to point out that the conceptions of solidarity described above do not imply that covid19 vaccination should be mandated to increase its uptake or limit the real impact of the virus this appears to be the view of julian savulescu 2 and keymanthri moodley 3 whose primarily consequentialist justification for compulsory vaccination includes a grave threat to public health by the unvaccinated lower vaccine risk or high confidence in vaccine safetyeffectiveness and greater expected utility of vaccination in comparison to the alternatives the fatality rates in some countries remain high as of september 30 2021 other countries like tanzania and botswana have been able to limit the real impact the virus could have and bring the daily death and infection rates under control through legally enforced restrictive measures and lockdowns 26 however the catastrophes resulting from these restrictive measures have been enormous eventually governments would have to ease restrictions an action with its own implications the global community would witness a resurgence of fatalities due to covid19 for example with the government of south africa easing the lockdown measures experts think a 5th wave might occur soon in the country vaccination could help prevent reinfections globally vaccination is recognised as the most effective public health measure for limiting the spread of vaccinepreventable infections saving lives failure to increase vaccine uptake could potentially undermine the wellbeing of vaccinated individuals since immunity wanes over time contrarily compelling vaccination appears to be a reasonable way of quickly upscaling vaccination and reducing the burden to health care systems others may critique that we have merely focused on the attractive formulations of solidarity in afrocommunitarianism that supports voluntary vaccination there may be other accounts of solidarity that could justify vaccine mandates in response we acknowledge that if many people are immune the capacity of the virus to spread is significantly reduced evidently empirical data from canada france and the united states support an increased vaccine uptake trend in populations to whom vaccine mandates apply 27 but empirical uncertainty remains on whether vaccine mandates in africa will lead to vaccine uptake on the continent if social values and preferences are strong influencers of health behaviours 28 then one should tread cautiously when appealing to empirical data outside of africa to inform decisions and policies in africa and for africa since as scholars have shown africans tend to live by a different value system 29 accordingly understanding peoples social values and preferences can become a powerful tool for formulating policies regarding vaccination increasing vaccine confidence and upscaling covid19 vaccinations health campaigns for covid19 vaccination uptake will be more effective if they take seriously how health behaviours are influenced in fact empirical data obtained from the continent reveals an existing increase in positive attitudes to covid19 vaccines in african countries like south africa 30 the positive disposition suggests that vaccine mandates may be unnecessary for upscaling vaccine intake at least in these countries additionally this disposition towards covid19 vaccines appears to also demonstrate that most africans value solidarity they seem to recognise the imperative to act altruistically to improve the conditions of those most vulnerable to the virus they are willing to take steps to limit the exposure of others to the virus because they see themselves implicated in their lives and how the failure to act also affects them regarding whether we have merely focused on the aspects of solidarity that appeal to us we acknowledge that the formulations of solidarity and its implications we used do not perfectly represent all the ways solidarity is conceptualized in african writings though we have drawn selectively on some formulations of this concept we do not think this is problematic since our goal is to appeal to its more salient formulations in african philosophy to describe how african scholars are more likely to think about the duty to vaccinate also many african scholars believe that cooperation is partly valuable when people willingly come together to share a way of life stay together and seek others wellbeing for their sake 31 this has practical relevance for upscaling vaccination a sense of shared identity has been found to be essential to as well as positively impact how individuals cooperate to respond to threats like the covid19 pandemic 32 additionally it seems intuitive that altruism is hardly altruism if it is compelled solidarity is also valuable partly when individuals in the solidary group can believe that others will not disappoint them or take advantage of their naivety trust enables individuals in the solidary group to share a way of life or identity and cooperate to realise the shared vision even when success may be uncertain it seems to us that any formulation of solidarity entailing vaccine mandates will likely imply that we should promote solidarity however we can such formulation would imply authoritarian approaches that would result in willing sacrifices of individual rights and liberties with the goal of promoting solidarity many african scholars believe that this is not the right way to showcase humanity 30 in other words we have a duty to promote communal relationships through friendly means rather than maximise or promote it regardless of the consequences nonetheless as we have acknowledged previously a systemic review is required to map the discussion on solidarity in african philosophy adequately underlying reasons for vaccine reluctance and solidarity another objection to the norms described in this paper is that they do not address the prevailing reasons for refusing vaccination these reasons tend to include a complex combination of confidence complacency and convenience but covid19 hesitancy is most closely associated with mistrust or lack of confidence in covid19 vaccines due to their risks and side effects the rushing of covid19 vaccine development has had a negative impact on the publics confidence in the vaccine 33 hesitancy is also associated with mistrust in the government and the health care system in fact studies show that the public will not receive the covid19 vaccine if they do not trust the health care system the authority and the communication response from the government and scientific community implying that trust is a significant driver of upscaling vaccination most of those who have expressed a lack of confidence also identified social media as their main source of information 1034 a theory that aims to foster vaccine uptake should address these reasons particularly trust this objection raises essential questions about communication and information dissemination since these will be necessary to reassure the publics confidence in vaccine safety communication strategies are required to realise these goals which we will address this in a future study the objection equally raises essential questions about how scientists ought to respond to concerns in a way that is accountable and promotes public trust additionally it raises critical questions about what continues to motivate science and to what extent these motivations are open to public scrutiny the idea is that these motivations must be open to scrutiny because they are essential in allowing the public to make right moral judgements about vaccination or trusting science put differently the public will hesitate to cooperate with scientists and governments to upscale vaccination if they do not trust them whereby trust is understood as the readiness to be vulnerable because one believes others will do no harm evidently social media plays a role in sustaining mistrust and fostering misinformation and inadequate information about covid19 vaccines and their effectiveness 10 however it can also be a tool for education for example 31 of persons who said they would not receive the covid19 vaccine trust social media 10 scientists and governments should use this medium to disseminate scientific data that counter inaccurate information and build public trust in vaccines since no vaccine is 100 effective some side effects have been reported in individuals who have received covid19 vaccination however these cases are rare and do not outweigh the expected utility most covid19 deaths or complications continue to occur among the unvaccinated 35 trustbuilding measures should also include honest engagement with claims including claims that challenge scientists views using scientific datafacts to counter false information and build trust through social media is not enough some individuals are more likely to believe persons they know and trust and with whom they have formed longstanding relationships and cooperations within the african settings these persons are elders traditional leaders clerics pastors and imams the principle of solidarity grounded in afrocommunitarianism suggests that these trusted individuals should participate in trustbuilding covid19 vaccination uptake measures and campaigns to make them more effective solidarity and public health decisions someone could claim that solidarity encourages individuals to consider the longterm impact an action may have on them or evaluate their decisions through the lens of egoistic calculus for this reason it seems not to be a good principle for public health ethics when activists and ethicists appeal to individuals to take covid19 vaccines because solidarity requires this it is not merely for altruistic reasons or because they genuinely care for the wellbeing of others instead it is because this costs less than the later intensive care that may be required due to covid19 complications or the burden on the health system this can be compared to the prisoners dilemma thought experiment 36 whether it is the revised version of the experiment where there is a possibility for retaliating noncooperation or where only one turn exists and decisions are made anonymously if parties can communicate with one another however briefly rationally selfinterested individuals will cooperate the point here is that social solidarity appears to be engendered by selfinterests if solidarity can form it will and the logic of selfinterest will be submerged as a result 37 this appears not to be a good principle for public health decisions which may require acting for the common good than our selfinterests it seems intuitive that selfinterested theories like egoism or subjectivism can be a basis for public health decisions in the same way otherregarding approaches like relationalism could be used to realise ones selfinterests within this context this implies that one ought to distinguish between how afrocommunitarians have understood this principle and how others may employ it it seems intuitive that these two are different and in fact bad people may use good principles to serve their interests this would not be a problem with the principle itself but how individuals have employed it and to what end while we acknowledge that the thinking about solidarity as entailing reciprocal obligation entails elements of selfinterests altruism as the basis for solidarity is not equally unusual in african philosophy this prosocial behaviour occurs frequently enough implying that the thinking about solidarity in african writings can adequately motivate public health decisions the reader should equally note the distinction we made between negative reciprocity and positive reciprocity wherein positive reciprocity that requires mutual aid is what is encouraged precisely positive reciprocity implies that the basis for formingjoining solidary groups is not to gainget more than others rather reciprocity entails an exchange of actions whereby an act that positively impacts others is reciprocated with an approximately equal positive act authorship contributions ce to and ca all discussed the idea of exploring how the african value of solidarity can help us think about the duty to vaccinate ce wrote the first draft to and ca significantly revised the draft enhanced it and suggested new references all authors revised the draft one more time and did not object to its submission the authors are equally responsible for the content of the manuscript ce submitted the article disclosure of interest the authors completed the icmje unified competing interest form and disclose no relevant interest finally the reader should note that we did not aim to determine which formulation of solidarity in african philosophy is the best or the most plausible instead we have focused on the implications of dominant formulations of solidarity in african philosophy for the duty to vaccinate notwithstanding many africans tend to think that reciprocity is a strong motivation for action and a valuable public health ethics principle as evidenced in some forms of relationships like letsema whereby members in a solidary group assist one another to harvest crops and equitably share the produce participation in this relationship is grounded in the thinking that prescribes reciprocal relationship those who assist others in harvesting their produce appear to do so hoping that others will do the same or support them at the time of their harvest additionally one study 38 that explores the preferences of adolescents parents and caregivers participating in an hivtb genomic study in botswana regarding genetic findings indicates that the majority of these africans consider the obligation to reciprocate participation in genomic research by returning actionable findings an ethical necessity conclusion in this paper we have argued that the principle of solidarity in afrocommunitarianism tend to favour voluntary rather than mandatory covid19 vaccination thus if vaccination can be mandated from the afrocommunitarian perspective solidarity appears to be an inadequate principle to justify this position in a previous publication 39 one of us demonstrated how ethics of friendliness grounded in a modal relational african account may justify the use of coercion or unfriendliness in this regard mandatory vaccination may be justified if it is necessary for the operational requirement of a workplace or accessing public facilities and there is no other way to ensure public safety or prevent harm contrarily if the african views of solidarity were to be the default consciousness of humanity the implications for the duty to vaccinate are that individuals will voluntarily vaccinate 1 because we ought to act for others sake 2 within the context of the pandemic this will be an appropriate way to act for the wellbeing of others and expect others to act for ones wellbeing and 3 we are implicated in one anothers lives and conditions such that the failure to act for their good entails a failure to be solidaristic studies are still required to inquire about how these norms can form the basis of public health ethics or decisions during a pandemic

some scholars have suggested that covid19 vaccine mandates may be justified based on the principle of solidarity yet they are hardly clear about the formulation s of solidarity in global or african bioethics literature that supports this view this is a critical gap

introduction health related quality of life is one and possibly the most important followup measure that is used to assess outcome after critical care 12 a decreased hrqol has repeatedly been shown for former icu patients both short and long term after critical care and compared with a general population 3 4 5 focus in such studies has been directed at factors believed to be important for this outcome the most commonly stressed are age sex duration of stay on the icu acute physiology and chronic health evaluation ii score and time on ventilator 1 also it has recently been claimed that preexisting disease is more important than the others listed and in a magnitude comparable to these factors taken together 6 this finding was made when a large control population was used and adjusted for comorbidities in that study approximately 50 of the decrease in hrqol was ascribed to comorbidities together with the other factors it may then be concluded that yet more factors must contribute to the hrqol situation for these patients in hrqol research outside the field of critical care it has been shown that factors such as social integration coping and socioeconomic factors also may be important for the hrqol experience 7 8 9 the concept of availability of social integration was primarily used in the mid seventies by the emergence of a new field of scientific research and initially used in the mental health literature 10 from this research the role of social relationships especially integration were emphasized to buffer negative health effects and furthermore that social integration maintains or sustains the organism by promoting adaptive behaviour of neuro endocrine responses in the face of stress or other health hazards risk factors of importance for the lack of social integration and health includes younger age and older female sex lower occupational grade less years of education lower social class immigrant more symptoms of ill health smoking and more frequent use of alcohol 1112 more socially isolated or less socially integrated individuals are less healthy both psychologically and physically and are more likely to die 713 research has indicated that psychosocial counselling during and after stressful procedures such as critical care can decrease the associated level of stress and improve the recovery process 1415 recently this has become a focus of research interest during intensive care 1617 however it is not widely used for this purpose after the period of intensive care and discharge from the hospital the aim of this study was to examine to what extent social integration patterns affects hrqol outcome in the 6 months followup of critically ill patients and to examine if the effect differ between that found for the icu patients and the general population materials and methods design this prospective multicenter study took place in three mixed medicalsurgical icus one university and two general hospitals in southeast sweden that have a regional referral area covering roughly one million people patients with primary coronary disease those recovering after heart surgery and neurosurgery neonates or patients with burns are treated in other specialised units and were excluded from this study the icus admit 500 750 patients annually and nearly all admissions are emergencies the most common primary diagnoses are multiple trauma sepsis and disturbances in respiratory or circulatory systems questionnaires and instruments a set of structured questionnaires were mailed to the study population 6 months after discharge from hospital the questionnaire contained questions about the patients background the questionnaire asked have you had any significant illness reduced body function or other medical problem and have had it for more than 6 months prior to the icu period with the answer alternative yes or no further this question also had the prespecified illnesses alternatives cancer diabetes heart failure asthmaallergy rheumaticgastrointestinal blood kidney psychiatric neurological disease thyroid or any other metabolic disturbance or any other long term illness the last alternative was an open question with a slot for free text availability of social integration the instrument availability of social integration 19 was used to assess social integration patterns avsi was developed in the beginning of the eighties and has been validated and found reliable 19 and used repeatedly in examinations of social structure in patient populations 20 21 22 furthermore one of these studies involves the reference group also used in the present study this instrument is one of four subscales in the extensive instrument the interview schedule for social interaction 19 avsi has been translated into swedish and has then been found a reliable instrument as well 11 in the swedish setting it has been used in epidemiological research 12 it comprises of 7 questions in 6 of them the respondent state how many persons they have supply from for example these days how many people with similar interests to you do you have contact with with six answer alternatives ranging from noone to more than 15 one question has the answer alternative yes or no irrespective of those at home do you have someone you can turn to if you are in trouble someone that you easily can meet and that you trust upon and that really can help you when you have hard times the questions generates a summation score index to a scale ranging from 6 to 36 health related quality of life the medical outcome short form 36 was chosen for the evaluation of hrqol 2324 the instrument is internationally well known and has often been used 25 sf36 has previously been applied in intensive care 6 26 27 28 and has recently been recommended as one of the bestsuited instrument for measuring hrqol in trials in critical care 29 sf36 has been translated into swedish and validated in a representative sample 30 it has 36 questions and generates a health profile of eight subscale scores 2430 these 8 scores were aggregated to form two commonly used summary measures the physical component summary score and the mental component summary score statistics data are presented descriptively using parametric statistics and nonparametric statistics linear regression analysis adjusted for sex and age was used to evaluate the independent effects of apache ii scores on admission length of stays in icu and hospital diagnoses on admission time on ventilator marital state level of education born in sweden or not age sex social support and preexiting disease on hrqol among the patients only standard statistical methods are used 31 further when icu survivors were compared with the reference group survivors older than 74 years were excluded since the reference population did not include subjects older than 74 years the statistical package for the social sciences was used for the statistical analyses probabilities of 005 were accepted as significant results clinical and sociodemographic characteristics of the patients during the study period 5306 patients were admitted to the icus of these a total of 1663 patients met the inclusion criteria after two remainders 980 patients answered the questionnaire the group who did not respond at all in the study differed from the group who responded in that there were fewer men higher average apache ii score shorter length of stay in the icu shorter time on ventilator and fewer gastrointestinal admission diagnoses for the reference group questionnaires were initially sent out to 10 000 people after two reminders 6093 had responded 12 apart from lower percentages of immigrants and single households the responders in the reference group differed only marginally from the reference population of the county 12 the reference group were younger had a higher rate of women higher rate of marriedcohabit and employed and had a lower rate of comorbidity than the icu group after adjusting for age in the icu group availability of social integration the former icu patients reported significant lower mean score in availability of social integration than the reference group 198 compared with 207 in table 3 the comparison between the individuals with or without comorbidity in each study group are shown the icu patients with preexisting diseases reported significant lower mean scores in availability of social integration compared with the icu patients who were healthy before the intensive care period for the reference group there were no differences in availability of social integration between the individuals with comorbidity or not significant differences in availability of social integration were also seen between the icu patients with preexisting diseases compared with the reference group with comorbidity between the healthy former icu patients and the healthy reference group there were no differences in availability of social integration discussion the new and important finding of this study is that availability of social integration patterns affects hrqol for former icu patients and this effect albeit smaller than that of preexisting diseases needs to be acknowledged in studies trying to comprehensively picture hrqol in former icu patients the cohort used in this study is a part of a large study that has previously been examined from several different perspectives 61826 health related quality of life has been examined short and long term in these investigations the cohort was found to be comparable to other general icu followup studies in scandinavia and in northern europe also the background characteristics are similar in comparison 32732 it may therefore be assumed that the findings presented in this study regarding the effects of social support are valid also for other units in this part of the world although in the present study the apache ii scores were higher in the nonresponders group los in icu and time on ventilator were increased in the study group this suggests that the study group comprises patients with relevant icu related illnesses very interestingly when comparing the availability of social integration value of the present icu groups with a control population from the uptake areas of the icu units it is evident that the icu population has a significantly decreased avsi score as anticipated we found a significant effect on avsi score by age but not sex 7 it needs then to be appreciated that a significant and most probably the largest effect on the avsi score for this patient group is the effect of preexisting disease this was also evident as an interaction in the statistical analysis despite this a significant effect of avsi score on hrqol remained after controlling for the effect of preexisting disease and age this finding suggests that avsi score has an effect on hrqol beyond what is registered due to effects of preexisting disease this stresses that avsi score is important when a comprehensive hrqol examination is being done on former icu patients or any other population furthermore of the socioeconomic factors examined only marital state was found to have an effect on hrqol and this effect was small there are a number of factors that may affect the conclusions of this study firstly the number of patients studied although done in a low populated area of sweden 980 patients were recruited to this study which makes it a very large study in this field of research secondly sweden is from a social perspective a homogenous country 12 this leads to the fact that variations in avsi scores in populations examined are rather small as was experienced also in this study 1112 the relevance of the present findings may then be larger in countries with larger social differences where adjustments of the effects of social network on the outcome of hrqol may be more important 33 thirdly another confounding factor is that it is difficult to examine the effects of socioeconomic factors in this rather homogenous population however although we did not have specific income data other often examined socioeconomic variables ie marital status education employment immigrants and sick leave were examined and adjusted for fourth and very importantly when examining effects of the availability of social integration patterns there is yet no consensus to what measure to use 3435 this makes it difficult to compare the outcomes of different studies for example the avsi score instrument used in the present study is a quantitative measure of the social integration it does not assess the quality of the social relationships and the corresponding support provided however those assessing quantitative aspects of social integration have claimed this approach more readily applicable and the questions are more easily and quickly understood and answered they have also found that the data predicts physical illness in prospective studies their psychometric properties however are unknown 36 fifth a complicating fact is that many factors of the population studied are known to affect avsi score and possibly the opposite applies as well that is preexisting disease age sex marital state all known to be important for the social integration pattern 1112 it is difficult then to know which effect that is causeeffect related as all these are known to affect social integration but at the same time several of them have strong effects on hrqol we believe however that when adjusting for such effects by multiple regression techniques the conclusions are still valid lastly a limitation of the present study is the response rate of 59 which on one hand is an acceptable rate for postal questionnaires but on the other hand there is a risk that the nonresponders could include more individuals with lower social integration the latter is at least in theory plausible conclusions the novel finding in this study is that the social integration patterns among former icu patients were found to affect hrqol and therefore it needs to be examined in parallel when comprehensive studies on hrqol in these populations are undertaken furthermore this effect is larger than any of the icu related factors but less than of preexisting diseases health related quality of life the reference group scored significantly higher hrqol than the icu patients in all eight dimensions of the sf36 and the summary component scores with mean score differences between 69 to 348 the pcs summary component score mean was 391 for the icu patient group and 500 for the reference group the mcs summary component score was 450 for the icu patient group and 490 for the reference group the summary component scores were used in a multiple linear regression analysis to evaluate the effect of availability of social integration apache ii score at admission to the icu length of stay in icu and in hospital diagnoses on admission to the icu time on ventilator marital status education born in sweden or not gender age and preexisting disease the results demonstrate that availability of social integration significantly affected hrqol both physically and mentally to a greater extent than age sex years of education marital state or immigrant but lower than preexisting diseases further availability of social integration significantly affected hrqol to a greater extent than icu related factors apache ii score length of stay in icu or time spent on ventilator of the icu related factors examined only the icu admission diagnoses affected hrqol more than the availability of social integration icu patients with lower mean availability of social integration scores and younger age had decreased physical and mental component scores the magnitude of this effect was less compared with the effects of preexisting diseases longer duration of stay in the hospital was associated with decreased physical component score and being singlewidowwidower was associated with decreased mental component score not all patients answered all questions data are number or mean

objectives to examine to what extent availability of social integration affect health related quality of life hrqol in former intensive care unit icu patients and how it relates to corresponding findings in a general reference group

background globally hundreds of millions of patients suffer from healthcareassociated infections every year with a higher burden in developing countries 12 hand hygiene has been accepted as one of the most costeffective measures in reducing both crosstransmission of microorganisms and healthcareassociated infections despite evidence of its effectiveness compliance with hand hygiene is rather low 3 this may be due to the nature of hand hygiene being an action driven by behaviour 4 and taking part within the socioeconomical and organisational context of healthcare facilities 56 compliance is influenced by leadership engagement peer pressure and role modelling 56 improvement strategies often fail because of insufficient implementation skills 7 which need to take into account behavioural aspects as part of the organisational culture 89 strategies fostering collaborative efforts and the development of partnership among healthcare workers have been shown to be beneficial in both hand hygiene promotion and the prevention of healthcareassociated infections 56 10 11 12 13 such interventions aim at influencing social networks within work teams and across healthcare professions with the final goal to change the organisational culture of an institution 14 there is limited information about the way change agents shape the social networks of work teams in healthcare and how this relates to organisational culture the objectives of this study were to describe the influence of peeridentified change agents and managementselected change agents on hand hygiene the perception of their leadership style by peers their ability to shape team dynamics and the role of the organisational culture in this process this report is part of a study examining the effect of change agents on hand hygiene behaviour in acute healthcare methods this study was conducted in collaboration with the malaysian ministry of health the world health organization collaborating centre on patient safety at the university of geneva hospitals switzerland and the university of new south wales sydney australia malaysia is an uppermiddleincome country in southeast asia 15 sarawak is the largest of the 13 states in malaysia and is situated on borneo island 16 the state has the most diverse population in malaysia with more than 40 ethnic groups and the highest percentage of christians 1516 in recent years the economy has shifted away from traditional mining agriculture and forestry towards hightech industries with renewable energy sarawak has 23 public hospitals and special medical institutions the total number of public and private hospital beds per 1000 people was 15 in 2015 17 compared with the average for malaysia of 18 in 2012 18 the doctortopopulation ratio in sarawak was 11184 17 compared with the malaysian average of 1632 in 2017 18 setting between february 2017 and march 2018 two medical wards were selected for an intervention on hand hygiene promotion at the sarawak general hospital a universityaffiliated tertiary care hospital in kuching malaysia kuching is the largest city and the economic centre in sarawak with a total population of 325132 17 the two wards were selected because of their interest commitment and receptiveness towards improving hand hygiene behaviour each ward had 42 official beds with nursetodoctor ratios of 696 and 645 respectively the nursetopatient ratio was 1 2 in both wards both wards consisted of a mixed internal medicine adult patient population often with chronic diseases and in case of overflow in the intensive care unit some patients underwent ventilation the study was stratified in pre during and postintervention periods of 4856 days intervention intervention outcome measurement and data entry are described in detail elsewhere in brief before the preintervention period hcws in the two wards anonymously nominated and ranked 10 peers to become their change agents for hand hygiene promotion before the wards were randomly assigned to picas or mscas the nurse unit manager and the head of the medical department selected change agents for study arm 2 during the preintervention period in total six change agents five nurses and 1 doctor were selected for each study arm to assure that at least one change agent would be present on any study day to reduce bias no information on randomisation was revealed and both picas and mscas were told that they were selected by senior management senior management refers to members of the medical and nursing boards of the department the 6 picas in study arm 1 were hcws with the highest numbers of nominations by their peers both picas and mscas were given the task to promote hand hygiene in their work teams during the intervention period by encouraging peers to perform hand hygiene giving feedback and offering correction or congratulation on missed or observed hand hygiene opportunities outcome measurement trained and validated auditors measured hand hygiene compliance by direct hand hygiene observation using the who methodology 19 and has been reported separately during the intervention period the principal investigator conducted 8 walkarounds in each study arm with the aim of observing interactions between change agents and staff and initiatives taken by the change agents to promote hand hygiene in the postintervention period six question and answer sessions in both english and malaysian were organized to explore the opinion of nurses towards picas and mscas the sessions were conducted over 6 days with a maximum of 10 randomly allocated participants per session in total 57 and 55 nurses in study arm 1 and study arm 2 respectively written informed consent was obtained from all participants a local infection prevention and control expert facilitated the q a sessions using a semistructured interview guide that addressed five areas of leadership attributes attitude self confidence approachability team role and decisionmaking capacities 520 the sessions were audiorecorded transcribed verbatim and translated into english in addition the participating nurses renominated five peers they preferred as leaders for hand hygiene promotion doctors did not participate in this exercise they also listed and ranked three main leadership qualities they considered important for hand hygiene promotion social network analysis data from the renomination lists were used to perform social network analysis with the nodexlpro software 21 three dimensions were distinguished 1 visual sociograms of the entire network 2 calculations of geodesic distance density and reciprocity of the network as a whole 3 calculation of centrality of the five most nominated individuals sociograms visualize the position of staff within the postintervention renomination network each hcw on the ward represents a node and the lines between the nodes describe the personal network of the hcws and the relational distance within this network geodesic distance measures the shortest route or pathway between two individuals and the range of their connections within the network the distance is reported as an average and maximum distance between individuals 2223 density measures the total interactions between individuals divided by the total possible interactions between individuals within the network reciprocity measures the degree of reciprocal nominations between individuals vertical hierarchies have low reciprocity while horizontal hierarchies have high reciprocity centrality measures individuals who are most connected and as such will hold influential positions in the network 24 the most common measures are degree centrality closeness centrality and betweenness centrality 25 in the current study degree centrality is the measurement of nominations directed towards an individual within the network 2425 closeness centrality is the average length of the shortest path between individuals closeness centrality captures how close one individual is to other individuals within the network based on how quickly or easily each individual can interact with other individuals smaller numbers indicate shorter distance betweenness centrality measures the number of times an individual is on the shortest path between two other individuals a high betweenness centrality indicates that an individual is an influential gatekeeper and is connected to the otherwise disconnected individuals in the network results hand hygiene compliance compared to the preintervention period hand hygiene compliance improved from 48 to 66 and from 50 to 65 during the intervention period in study arm 1 and study arm 2 respectively there was no significant difference of hand hygiene improvement between the two study arms question and answer sessions perceived leadership styles of picas and mscas expressed by hcws during the q a sessions in the postintervention period differed substantially between the two study arms and in all five areas of leadership attributes in accordance with observations during the ward walkarounds mscas were reported to apply an authoritative leadership style while picas acted more by being a role model a total of 69 and 68 leadership attributes for hand hygiene promotion were received from q a participants of study arm 1 and study arm 2 with 201 and 172 citations respectively the most commonly quoted leadership quality for hand hygiene promotion was a strict attitude cited by 40 hcws in study arm 1 and 27 times in study arm 2 social network analysis social network analysis was performed on 56 and 55 hcws in study arm1 and study arm 2 respectively one hcw from study arm 1 did not participate in the social network questionnaire ward hcws included senior junior and auxiliary nurses with an average work experience of 7 years in study arm 1 and 6 years in study arm 2 respectively the wards were similar for the number of nominated relationships with 315 and 295 in study arm 1 and study arm 2 respectively the sociograms illustrate similar social networks in both study arms peeridentified change agents and mscas who were renominated in the postintervention period had strong networks one pica and one msca who were nominated in the preintervention period but not renominated in the postintervention period were less connected than other initially nominated hcws figure 1 shows the visual sociograms of the entire network the average and maximum geodesic distances between individuals in both study arms were 19 and 30 respectively on average each hcw in both study arms was only two steps away from a renominated leader indicating that both networks were cohesive the density of both networks was 008 for each study arm indicating that there was little interaction between hcws in both networks reciprocities of study arm 1 and study arm 2 were low 008 and 010 respectively this indicated a hierarchical network with only 8 and 10 of the pairs being nominated by each other the medians for the degree centrality closeness centrality and betweenness centrality of picas and mscas indicate that the leadership styles of both picas and mscas would equally influence hand hygiene ranges of centrality were similar in both study arms the median centralities for the top five renominated leaders in the postintervention period were similar in both study arms however the range for the betweenness centrality in study arm 2 was wide while this range in study arm 1 was narrow compared to picas mscas had more work experience both overall and in the ward both picas and mscas had low betweenness centralities compared to the topfive renominated leaders discussion the fact that there was no difference in hand hygiene compliance between the two study arms was a major finding of the intervention strategy of the overall study qualitative q a sessions provided indepth insight into perceptions of leadership styles by hcws while quantitative social network analysis explained relationships of complex interactions in work teams the methods complemented each other and provided a picture of socially cohesive work teams with staff nominating socially wellconnected peers while preferring the statusquo of a strict even authoritarian leadership style for hand hygiene promotion the little interaction between hcws the low number of renominated leaders and the low nominatornominee ties suggest that the networks in both study arms were highly hierarchical the average short distance between the hcws suggested that both work teams were cohesive however poor reciprocity and low ties suggested that the hcws did not rely on each other for assistance at least not for hand hygiene two of the five renominated leaders in both study arms had been identified as change agents their renomination supports the diffusion of innovation theory 26 hypothesis that change agents are early adopters who make change acceptable for their peers in the context of facilitating the adoption of good hand hygiene practice behaviour these change agents were important for linking disconnected hcws towards hand hygiene practice the picas in study arm 1 promoted hand hygiene improvement through leading by example however hcws in this study arm indicated that when given a choice they preferred authoritarian leadership even though they also expressed unease with this leadership style and they renominated rather socially skilled peers in the postintervention period these findings exemplify the predominance of the existing organisational culture on behaviour even if it causes cognitive dissonance 9 this may have been shaped by the local culture of native tribes in sarawak always to appoint elderly seniors to be leaders 27 however preference for hierarchical organization structures by hcws has been reported also in other countries and in different healthcare settings 28 29 30 our study has limitations first concerns about confidentiality in the q a sessions may have motivated hcws to renominate leaders for hand hygiene promotion based on social expectations rather than their personal preference second the study duration was relatively short to observe the full effect of a behavioural change intervention on organisational culture a prolonged postintervention period may have influenced both hand hygiene compliance and the perception of leadership style by staff we hypothesise that in the longterm the effect of picas on hand hygiene compliance may be superior compared to mscas because hcws feel more at ease working with them third the limited although significant improvement of hand hygiene compliance exemplifies the reality given the short study periods and mandating internal change agents conclusion despite experiencing successful hand hygiene improvement from picas who led by example hcws expressed a preference for the existing authoritarian leadership structure this highlights the limits of applying leadership models that are not supported by the local organisational culture and urges the need to repeat such study in other cultural settings there was no difference in hand hygiene improvement between both study arms abbreviations hcws healthcare workers mscas managementselected change agents picas peeridentified change agents q a question and answer who world health organization funding the research did not receive any specific grant from funding agencies in the public commercial or noforprofit sectors the publication fee was funded by the institute of clinical research national institute of health ministry of health malaysia this work was supported by the infection control programme and who collaborating centre on patient safety university of geneva hospitals and faculty of medicine geneva switzerland hand hygiene research activities at the spciwcc are also supported by the swiss national science foundation competing interests the authors declare that they have no competing interests

background hand hygiene compliance can be improved by strategies fostering collaborative efforts among healthcare workers hcws through change agents however there is limited information about how change agents shape the social networks of work teams and how this relates to organisational culture the objectives of this study were to describe the influence of peeridentified change agents picas and managementselected change agents mscas on hand hygiene perception of their leadership style by peers and the role of the organisational culture in the process of hand hygiene promotion methods this study stratified in pre during and postintervention periods was conducted between february 2017 and march 2018 in two wards at a tertiary care hospital in malaysia hand hygiene promotion was facilitated either by picas study arm 1 or mscas study arm 2 and the two wards were randomly allocated to one of the two interventions outcomes were 1 perceived leadership styles of picas and mscas by staff vocalised during question and answer sessions 2 the social network connectedness and communication patterns between hcws and change agents by applying social network analysis and 3 hand hygiene leadership attributes obtained from hcws in the postintervention period by questionnaires results hand hygiene compliance in study arm 1 and study arm 2 improved by from 48 95 ci 4453 to 66 6369 and from 50 4455 to 65 6069 respectively there was no significant difference between the two arms healthcare workers perceived that picas lead by example while mscas applied an authoritarian topdown leadership style the organisational culture of both wards was hierarchical with little social interaction but strong team cohesion position and networks of both picas and mscas were similar and generally weaker compared to the leaders who were nominated by hcws in the postintervention period healthcare workers on both wards perceived authoritative leadership to be the most desirable attribute for hand hygiene improvement conclusion despite experiencing successful hand hygiene improvement from picas hcws expressed a preference for the existing topdown leadership structure this highlights the limits of applying leadership models that are not supported by the local organisational culture

introduction chronic illness constitutes a critical public health challenge that affects both social and economic development worldwide chronic illness also represents a major challenge for health services data from the who reveals that noncommunicable diseases cause 41 million deaths annually equivalent to 71 of all deaths globally 1 the steady increase in the prevalence of chronic illnesses is due in part to the progressive aging of the population together with an increased life expectancy thus people with several illnesses or chronic conditions live longer than in the past 2 faced with this scenario health services are undergoing a reorganizational shift from a model centered on illness and treatment to one centered on the individual and their particular chronic conditions both institutional and personal environments social support has been studied in several contexts one of which is informal caregiving 2728 compared to other approaches in social support research personal network analysis also labeled as egocentric network analysis in the literature 29 is based on the ensemble of relationships that surround an individual across social settings as well as the relationships between the persons contacts 3031 this enables the simultaneous study of micro phenomena and meso phenomena 32 previous research has noted the effects of personal networks on individual outcomes based on theoretical frameworks such as the social capital and the social influence through diffusion and social support with the latter being one of the most studied areas based both on this approach and on different disciplines 33 from this perspective a pna constitutes an excellent approach to the study of social support in the context of informal care in chronic illness since this can be used to measure the structure and composition of personal networks and the functional content of social support this enables the possibility of differentiating the personal network from the support network as well as relating these personal network characteristics including the structural variables with other variables of interest whereas in general social support studies evaluate the quality or the quantity of a persons social ties studies based on pna regard these ties as being potentially of interest 34 this is based on the importance of the relationships between the interacting units 30 therefore the structural variables of these relationships are commonly included in the analysis in the study of social support one dimension of interest is the quality or sense of satisfaction this dimension reflects the discrepancy among the interactions between real and desired support the relevance of this distinction is that satisfaction with social support provides a better explanation of the quality of life and health outcomes when compared with the mere provision or number of support providers 3536 regarding the assessment of satisfaction although it has been used in some instruments intended to evaluate social support 37 there is a gap in the literature regarding the role of the personal networks characteristics in the quality or satisfaction with social support thus this study focuses on the quality of social support received from personal networks in the context of chronic pain this dimension has seldom been researched 3638 despite being a highly relevant health problem due to its prevalence complexity and the consequences for both the individual and the social environment in which it is embedded 3940 our approach provides a rich set of measures at the tie level that allows us to measure with detail personal networks structure composition and functional content of social support along with its perceived quality just having this type of detailed information it is possible to suggest ways to improve the effective selfmanagement of individuals in chronic pain situations materials and methods this research is part of a larger study aimed at examining social support and quality of life in the context of chronic pain 41 in a prior publication the descriptive results of this larger study were presented using a mixed approach 42 showing that different types of personal networks were associated with selfreported quality of life which scored below the populational mean in all dimensions considered design a descriptive crosssectional study using personal network analysis sample description the inclusion criteria of participants were people over the age of 18 diagnosed with chronic pain and receiving care at marques de valdecilla university hospital pain unit of santander without mental or cognitive decline and who agreed to participate voluntarily in the study convenience sampling was used to select participants an equal number of men and women that met the inclusion criteria and were recommended by professionals working at the pain management unit among their patients all voluntary participants were briefed about the goals and methods of the research and signed an informed consent form all of them agreed to be interviewed several times if necessary either at the hospital or participants homes according to their health status and personal preferences nobody requested to quit the research probably because of the positive assessment of both the attention and feedback about their personal networks they received during the interviews fieldwork and data analysis were conducted between july 2014 and july 2015 the personal networks of the 30 cases amounted to a total of 600 personal relationships variables the data collection included participant variables their contacts and details regarding their personal network sociodemographic data sex age civil status level of studies and work situation variables regarding the composition of the personal network age sex type of tie with ego place of residence and proximity social support type satisfaction reciprocity variation over time frequency and channel of transmission variables regarding the structure of the personal network density degree centrality betweenness centrality number of components and number of isolates data collection instruments personal network egonet opensource software was used to collect and analyze each egos personal network data additionally ucinet software 43 was used to calculate degree and betweenness centrality for each of the 600 alters studied sociodemographic pain variables and personal network data were collected based on an ad hoc questionnaire designed in accordance with the study objectives data analysis bivariate linear mixed models were used to analyze the satisfaction with the social support received these were converted into the following numerical values very unsatisfactory 0 quite unsatisfactory 1 satisfactory 2 quite satisfactory 3 and very satisfactory 4 ego characteristics and structure composition and functional content in social support of their personal network were considered as explanatory variables the ego was included as a random effect for the analysis of the structure and composition of alter variables variables with a pvalue of 02 were included in a multivariate logistic regression model to identify which factors were related to satisfactory or very satisfactory support additionally a multiple correspondence analysis combined with classification methods were used in order to establish typologies for the 600 relationships examined in terms of the quality of the social support received from the egos point of view mca is a descriptive exploratory technique designed to analyze multiway contingency tables with cases as rows and categories of variables as columns 44 components obtained from the mca were submitted to a cluster analysis applying wards hierarchical clustering method 4546 results were represented in a tree dendrogram using rsquared distance bivariate tests were conducted between each of the explanatory variables and the profiles using chisquare tests to describe the obtained profiles the statistical analysis was performed using sas v94 software and the significance level was set at p 005 ethical considerations the clinical research ethics committee of cantabria provided ethical approval for this study all study participants received verbal and written information concerning the study objectives and procedure participation was voluntary and all participants provided their signed informed consent furthermore this study adhered to national and international ethical guidelines and fulfilled data confidentiality legislation results sociodemographic variables in total 30 people participated in the study the mean age of participants was 5457 years their marital status was married or with a partner divorced and widowed their educational level was primary education vocational education secondary education and higher education their employment status at the time of the interview was retired active on sick leave due to pain and homemaker the mean length of time since the onset of chronic pain was 122 years in men and 166 years in women bivariate analysis the satisfaction with the social support received in the 600 personal relationships studied was distributed as follows very satisfactory 123 quite satisfactory 22 satisfactory 26 quite unsatisfactory 65 the very unsatisfactory category was present in 332 corresponding to relationships where no support was provided ego variables from the bivariate analysis no statistically significant relationships were observed between satisfaction with social support received and the following ego variables age gender level of studies work situation civil status level of pain pain duration and the number of cohabitants however the results obtained when comparing the means of age and duration of pain variables for the ego are notable the quality of social support received decreased as the egos age increased and as the time with chronic pain increased age of ego for the categorical variable age as age increased satisfaction decreased • participants aged between 30 and 51 years mean satisfaction 201 • participants aged between 52 and 63 years mean satisfaction 172 • participants aged between 65 and 73 years mean satisfaction 151 duration of pain using the categorical variable model and recoding the duration of pain variable we observed that as the duration of pain increased satisfaction decreased • duration of pain between 1 and 8 years mean satisfaction 204 • duration of pain between 9 and 19 years mean satisfaction 167 • duration of pain between 20 and 39 years mean satisfaction 15 composition variables regarding the composition variables the most satisfactory support was defined by an adult female alter with whom the ego had a strong tie who was a close family member and who lived geographically close structural variables regarding the structural variables of the personal network the quality of the social support received increased as the density of the network increased in contrast the quality of support decreased as the number of isolates and components increased regarding the node as the degree centrality of the alter increased satisfaction increased likewise satisfaction increased as the betweenness centrality of the alter increased functional social support regarding the social support characteristics of the 600 relationships examined 401 supportproviding relationships were identified and 199 relationships in which support was not provided thus the mean number of providers and nonproviders was 13 and 7 respectively for each ego the functional variables concerning social support reveal that the personal relationships offering greater quality support from the egos perspective were characterized by offering various types of support this was provided facetoface or combined with daily telephone calls which could become more frequent over time and occurred in reciprocal support relationships multivariate logistic regression model from the multivariate logistic regression model we obtained that the variables which were related to the satisfactory or very satisfactory support were age of the ego sex of the alter tie with the ego reciprocal relationships in the support and relationships in which the ego has a very strong tie cluster analysis in order to explore the 600 relationships examined in terms of the quality of the social support received a multiple correspondence analysis was performed variables included in the analysis were the sex of the alter tie with the ego type of support satisfaction frequency transmission channel reciprocity and proximity we obtained 11 factors that accounted for 75 of the total variability applying a classification algorithm to these factors three clusters were obtained which comprise the totality of the 600 studied relationships the satisfaction profiles presented the following distribution profile 1 represented by a majority of satisfactory relations with the social support received profile 2 represented by a majority of very and quite satisfactory relationships considering the social support received and profile 3 represented in its totality by very unsatisfactory relationships and corresponding to the nonproviders of social support present in the personal networks studied table 4 displays the distribution of egos among the three profiles according to age in consonance with the results of the bivariate analysis presented above and which revealed a decrease of satisfaction as the age of the ego increases the relationships containing cluster 3 and valued as being very unsatisfactory with the social support received corresponded with egos over the age of 65 in almost 50 of cases graphically these relations are grouped forming three profiles as shown in the following dendrogram the horizontal axis represents individuals that are grouped by horizontal lines at a height that represent the distance between the two linked clusters relationships considering the social support received and profile 3 represented in its totality by very unsatisfactory relationships and corresponding to the nonproviders of social support present in the personal networks studied table 4 displays the distribution of egos among the three profiles according to age in consonance with the results of the bivariate analysis presented above and which revealed a decrease of satisfaction as the age of the ego increases the relationships containing cluster 3 and valued as being very unsatisfactory with the social support received corresponded with egos over the age of 65 in almost 50 of cases graphically these relations are grouped forming three profiles as shown in the following dendrogram the horizontal axis represents individuals that are grouped by horizontal lines at a height that represent the distance between the two linked clusters composition variables table 5 presents the distribution of the personal network composition variables across the three profiles the social support that was deemed more satisfactory was provided by women close family members middleaged people those with whom the ego has a strong tie reciprocal support relationships and people living geographically close to the ego although to a lesser degree there was a presence of more unsatisfactory relations with nonproviders in the case of close adult family members composition variables table 5 presents the distribution of the personal network composition variables across the three profiles the social support that was deemed more satisfactory was provided by women close family members middleaged people those with whom the ego has a strong tie reciprocal support relationships and people living geographically close to the ego although to a lesser degree there was a presence of more unsatisfactory relations with nonproviders in the case of close adult family members for the analysis of the family roles we have considered close family members partner parents siblings and children family members auntsuncles grandchildren cousins grandparents nephewsnieces and brotherssistersinlaw and other family members family roles not included in and the variable proximity was examined based on five categories which were recoded into two categories a strong tie very close quite close and close and weak tie not very close and not close at all structural variables table 6 presents the multivariate analysis findings considering the importance that structural measures have on the personal network for the quality of the support in consonance with the results of the bivariate analysis presented above in this manner the personal network providing the most highlyvalued level of satisfaction combined both a degree centrality and high density with a high betweenness centrality both of which were above the overall mean likewise the findings reveal a tendency for satisfaction levels to decrease in networks that were more fragmented with less cohesion or with a greater number of isolates and components functional social support regarding the specific characteristics of the social support provided the greatest quality was associated with the combination of different types of support especially emotional and instrumental support likewise the frequency of the provision of support and facetoface contact or combined with the provision of telephone support represents the most satisfactory support relationships below we display the graphs of two study participants with different levels of satisfaction with the social support received the most satisfactory support network corresponds to a woman aged 40 years who had chronic pain for 14 years whereas the graph that illustrates the least satisfactory support network is that of a man aged 66 years who had experienced chronic pain for 35 years table 8 shows the legend of graphs and table 9 displays the quantitative results of the differences in these three personal network dimensions examined as well as the quality of social support transmission channel facetoface facetoface and telephone 65 10 45 in addition to the differences of age and time since onset of pain in each of the two cases presented the comparison of these two networks reveals differences affecting the structure composition and content of the social support as well as the satisfaction with the social support received by each of the two participants discussion this study aimed to examine the structure composition and functional content of social support in the context of personal networks in relation to satisfaction from the ego perspective it is important to consider these conditions in order to assess social support as a relational element that is contained and transmitted within social relations 20 composition variables the most highlyvalued social support was provided by middleaged female alters with whom the ego maintained a close relationship and who lived geographically close to the ego these characteristics highlight the importance of the age of the alter on the ability to offer support or the geographical proximity of the alter which is considered key especially for the provision of instrumental or tangible support 47 48 49 regarding the type of tie with the ego our results add to the existing literature which underlines the significant role of the family and friends in the provision of social support 50 nonetheless it is necessary to consider that although family roles represent 768 of the most satisfactory relationships they also represent 558 of the total number of relationships in the profile identified as the most unsatisfied with the social support received therefore when considering social support in the framework of social relationships it should be appreciated that not all aspects of socalled close relationships are positive 2051 negative interactions together with social loss and loneliness constitute adverse aspects of social interactions 52 which can be detrimental to a persons health by influencing the sense of wellbeing life stress less supportive networks and psychological distress 53 54 55 likewise specifically in cases of chronic pain it is also necessary to consider the impact of pain and the resultant effects on a persons social and family relationships 394056 including effects on their partners 57 58 59 60 therefore these findings suggest the need for contextual and longitudinal assessments of support in longterm conditions as these factors affect both the receiver as well as the provider of support and the relationship dynamics structural variables our results have shown that quality in the provision of social support is related to certain levels of density as well as with a relatively high betweenness centrality nonetheless none of these explain separately the maximum level of satisfaction therefore the results suggest that the ideal support network should strive for a certain balance between a dense center and a periphery that may act as a bridge with other more diverse relationships from a sociological point of view social structures affect and are affected by human behavior 61 in the field of health several studies have underlined the role that the network structure plays in different health outcomes such as the effect of the same on healthrelated behaviors 62 63 64 in the transmission of sexually transmitted diseases 6566 in mental health 67 or the relation between network structure and health status 68 likewise some studies have found certain benefits derived from having a network with different social domains and with a diverse typology of alters as these can act as facilitators of other resources offering different types of support 6970 therefore an alter with a high betweenness as shown by our results represents a quality support resource for ego which can benefit from these indirect relationships conversely some studies have found that density is not automatically related to social support 7172 and that networks with low density are more adaptive and offer greater support according to determined contexts 73 we contend that this idea of balance among density and intermediation in the structure of the personal network is important when evaluating social support for the case of chronic pain a dense network may guarantee the availability of emotional support in which strong ties mainly are represented by kin and close relationships however the same relationships over time may lead to a redundancy of the alreadyknown support resources and alters with a high betweenness might enable access to new support resources of great value for ego although certain levels of density are necessary for achieving a feeling of safety something necessary in a healthy personal context the effectiveness of the network in relation to social support is based on ties that allow access to diverse resources with alternative ways of thinking and acting 7475 and that the person may use as social capital assets 76 therefore in certain contexts density and intermediation offer different advantages and may in fact be complementary 77 functional social support concerning the types of support provided emotional support was most highlyvalued followed by the combination of emotional and instrumental support reinforcing the importance of a multiplexity or diversity of resources 34 thus in the context of chronic pain emotional support may guarantee a feeling of accompaniment understanding and empathy for the other persons situation as well as constituting a coping resource enhancing the ability to adapt to the situation and acting as a facilitator of selfmanagement furthermore in the case of chronic pain having the instrumental support of others is necessary because of the impairments associated with the performance of basic activities of daily living such as for example mobilization hygiene or personal grooming our findings support previous research 78 79 80 showing that relationships characterized by reciprocal support are those that are most highlyvalued highlighting the importance of this characteristic in relationships involving health aspects in addition increasing and frequent facetoface support is a characteristic of the most highlyvalued support relationships it is important to note that these findings may be related to caregiver burden as a consequence of caring for people with chronic illnesses in the long term 81 82 83 according to previous studies 84 and highlighting the importance of the dynamic nature of personal relationships throughout the life cycle our findings reveal that satisfaction with the social support received decreases as the age of the ego increases and as the time since the onset of pain increases this aspect is highly relevant in chronic illness and more specifically in the case of chronic pain mainly because of the increased prevalence of this disorder in aging populations 3956 the changes in personal networks at the egoalter level ie the alters that are lost and are added to the personal network over time and changes in the characteristics of the relationships as a consequence of life events that may affect the content in social support 85 86 87 personal contexts namely the characteristics of relationships and personal networks are key elements that help us understand the complexity of satisfaction with social support for selfmanagement in chronic illnesses future research with a longitudinal design is recommended focused on the study of variations in social support over time in individuals with chronic pain lastly comparative studies involving personal network research may reveal possible differences in structure composition and content in the social support of personal networks according to the age of the ego as well as providing further information on the support networks of older people conclusions the satisfaction with the informal care received by people with chronic pain via their personal network resources is different according to personal characteristics such as age pain the amount of time since the onset of chronic pain as well as characteristics related to their personal network personcentered care implies considering the different social and relational contexts in which people live their lives support for selfmanagement in situations of chronic illness includes the support provided by primary care nursing professionals and health organizations via different strategies as well as the support from the social and personal environment surrounding the person and therefore both can be considered as being complementary from the point of view of the support provided by the personal network we have shown that a balance between degree centrality and betweenness is needed in order to achieve higher satisfaction with the support received this finding may help to enhance the selfmanagement capabilities of this type of patient by introducing small adjustments to their personal network structures in this vein cases in which insufficient or inappropriate social support are detected in an individuals personal environment could benefit from the implementation of strategies based on specially designed network interventions with the aim of guaranteeing the continuity and appropriateness of care and support over time author contributions rfp and jlm conceived of the study and designed the research ov analyzed the data rfp and jlm wrote the initial manuscript all authors have read and agreed to the published version of the manuscript funding this research received no external funding

the worldwide burden of chronic illnesses constitutes a major public health concern and a serious challenge for health systems in addition to the strategies of selfmanagement support developed by nursing and health organizations an individuals personal network represents a major resource of social support in the longterm adopting a crosssectional design based on personal network analysis methods the main aim of this study is to explore the relationship between satisfaction with the social support received by individuals suffering chronic pain and the structure composition and functional content in social support of their personal networks we collected personal and support network data from 30 people with chronic pain 20 persons contacts alters for each individual ego 600 relationships in total additionally we examined the level of satisfaction with social support in each of the 600 relationships bivariate and multivariate tests were performed to analyze the satisfaction with the social support received using cluster analysis we established a typology of the 600 relationships under study results showed that higher satisfaction was associated with a balance between degree centrality and betweenness ie measures of network cohesion and network modularity respectively finally new lines of research are proposed in order to broaden our understanding of this subject

introduction innovation diffusion theoretical foundations diffusion refers to the process by which an innovation is adopted over time by members of a social system commonly an innovation refers to a new technology but the conceptual notion can be applied far more broadly to consider the spread of ideas and practices rogers laid down the theoretical foundations of innovation diffusion in his book diffusion of innovations in which he synthesizes studies in anthropology sociology and education and proposes a generic theory to explain the diffusion of innovations among individuals and organizations he suggests five characteristics of innovation to determine the rate of adoption relative advantage compatibility complexity trialability and observability rogers models human decision about adoption of innovation as a multistage process involving five stages knowledge persuasion decision implementation and confirmation furthermore he classifies individuals into five adopter categories innovators early adopters early majority late majority and laggards in addition to these highlevel considerations much attention has been on the significance of social relationships and influence in innovation diffusion starting with early groundwork ryan and gross there has now been extensive research on how social network structure group norm opinion leadership weak ties and critical mass impact diffusion of innovations mathematical models of innovation diffusion traditional mathematical models of innovation diffusion aim to model aggregate trends rather than individual decisions numerous such models follow the framework of bass model which is one of the most influential models in marketing the bass model was originally designed for forecasting sales of new consumer durables the model assumes that the probability of adopting a product given the person has not yet adopted is linearly related to the number of past adopters the bass model can be calibrated with aggregate sales data and bass showed that it can qualitatively capture the sshaped pattern of aggregate adoption over time the bass model has a number of limitations first it does not capture individual interactions indeed the model explicitly assumes a fully connected and homogeneous network for innovation diffusion this is an important drawback as individual interdependence and communications are among the most significant aspects to understand innovation diffusion the second criticism of the bass model is that it does not include any decision variables that are of interest from a managerial perspective the issue has been addressed later by incorporating the marketing mix variables price and advertising into the diffusion model for an extensive review of research in this direction we refer readers to mahajan et al meade and islam nevertheless these marketing mix variables are mostly designated for the entire market without a consideration of individual heterogeneity lastly the predictability of the bass model is often questioned for example chandrasekaran and tellis argue that the model needs considerable data around the critical point at which diffusion accelerates to be effective but once such data is available the value of the bass model becomes limited agentbased modeling for innovation diffusion agentbased modeling has emerged as another natural approach to study innovation diffusion agentbased models are typically simulation models that capture dynamic interactions among a collection of individuals they were originally developed as a tool for complexity theory research and have gained popularity in many scientific areas for the past decade the abm paradigm offers two advantages for the study of innovation diffusion first it facilitates the modeling of agent heterogeneity and second it enables finegrained modeling of interactions mediated by social networks indeed agentbased modeling has been applied in study of innovation diffusion to aid intuition theoretical exploration and to provide policy decision support traditional agentbased models are largely conceptual this use of abms as primarily conceptual tools is partly because they are commonly considered as ideal learning tools for scientists to understand a system under a variety of conditions by simulating the interactions among agents as a consequence the simplicity of agent rules is commonly a crucial consideration in the design of agentbased models such simplicity however has given rise to criticism of the abm methodology as being toy models that do not reflect reality moreover an increasingly important criticism is that if abms are used in any policy decision support the predictive validity of the model becomes paramount and models that are primarily conceptual may be inadequate for such tasks it is this increasing use of agentbased modeling to obtain policy guidance that has motivated increasing use of empirically grounded agentbased models empirical agentbased models have recently experienced significant growth in these studies empirical data are used to initialize simulation parameterize agentbased models or to evaluate model validity the explosion of highresolution data sets coupled with advances in data analytics and machine learning have given rise to increased opportunities for empirically grounding agentbased models and this trend is likely to continue our goal is to provide an overview of these empirically grounded agentbased models developed with the goal of studying innovation diffusion through a careful examination of these studies we also aim to identify potential methodological issues that arise and suggest ways to address these contributions the diffusion of new products has been an important topic for decades the prevalence of abm approach can be glimpsed from a number of review papers from disciplines like sociology ecology and marketing for example garcia describes potential uses of abm in market research associated with innovations exploring benefits and challenges of modeling complex dynamical systems in this fashion dawid surveys agentbased models of innovation diffusion within a computational economics context peres et al review diffusion models in the context of a single market and crossmarkets and brands to the best of our knowledge the closest work to ours is a review of agentbased simulations of innovation diffusion by kiesling et al who survey both theoretical and empirical work in comparison with these past reviews we make the following novel contributions 1 we provide systematic review of the empirical agentbased models of innovation diffusion this is in contrast to the narrative review of the applied work as provided in kiesling et al in particular we offer a novel classification of agent adoption models as employed in the reviewed papers by highlighting the adoption models and their parameterization methods we aim to bridge methodological gaps among domains and applications we identified the papers to include in a rigorous and systematic manner in terms of scope any work presenting an agentbased model using empirical data to simulate the diffusion of innovations was included our selection process combined results from multiple databases including google scholar and sciencedirect with extensive search for relevant keywords and backtracking and forwardtracking reference lists while carefully screening out noncandidates 2 our review is comprehensive and updated the collection of reviewed papers spans a superset of the applications as covered in kiesling et al and indeed a number of significant efforts have emerged after 2012 notably we also include a selection of papers from the literature on information diffusion a fastgrowing area these models rely on principled machine learning techniques for model calibration based on empirical observations of diffusion traces in addition we exclude two papers from kiesling et al which are not empirically grounded in the end we reviewed 43 papers of which 30 were not included by kiesling et al 3 we provide a critical review assessing strength and weaknesses of the surveyed research almost all surveyed papers followed standard modeling steps and presented their results systematically however we conclude that the current literature commonly exhibits several major shortcomings in model calibration and validation1 addressing these issues would significantly increase the credibility of agentbased models we therefore devote a section to an overview of existing validation methods in the literature and an indepth discussion of these issues and potential solutions categorization of empirically grounded abms of innovation diffusion we review the burst of recent developments of empirically grounded agentbased models which are examined through two dimensions models and applications first to facilitate methodological comparison we group the papers into six categories which represent the specific approaches taken to model individual agent decision processes mathematical optimization based models economic models cognitive agent models heuristic models statisticsbased models and social influence models second as we observe that modeling efforts span several domains the next section offers an applicationfocused categorization the categorization in this section is aimed at qualitatively clustering the existing agentbased models with respect to their modeling methods which can be further characterized from several dimensions such as behavioral assumption data granularity internal structure calibration and validation the six categories we identified present a comprehensive picture and structured patterns of the different methods used to model individual agent decision processes seen in a variety of applications we review each paper in sequence and in some detail providing sufficient depth in the review for a reader to understand the nature of each surveyed work in particular we focus on how data was used in the modeling process and in particular in initialization calibration and validation steps we attempt to draw connections among the papers using our categorization structure table 1 shows how these survey articles are distributed across the categories and publication years2 notice that this approach is different from the synthesisbased approach followed by other review papers such as windrum et al and macal which generally draws conclusion for a collection of papers but does not provide sufficient detail to assess how data is used in these efforts mathematical optimization based models the mobased models posit that agents are deliberate decisionmakers who use sophisticated mathematical planning tools to assess the possible consequence of actions while agents may encounter uncertainty incomplete information and constraints their final decisions to adopt innovations are determined by concrete optimization objectives the use of complex mathematical programs is commonly justified by the fact that farmer agents often consider their farming decisions in terms of economic returns in a seminal paper berger developed a spatial multiagent mathematical programming model of diffusion of farming innovations in chile production consumption investment and marketing decisions of individual households are modeled using linear programming with the goal of maximizing expected family income subject to limited land and water assets moreover in accordance with the literature on innovation diffusion the model incorporates effects of past experience as well as observed experience by peers this is done by imposing a precondition for the mp procedure that the net benefit is only calculated if peer adoption level reaches the predefined threshold in addition to such contagion effects agent interactions are also reflected by the feedback effects of land and water resources and returnflows of irrigation water implemented by coupling the economic agent decision model with hydrological components in simulation models agents are cellular automata with each cell associated with biophysical and economic attributes such as soil quality water supply land coverland use ownership internal transport costs and marginal productivity these agent properties are initialized using empirical data derived from various data sources including a survey that captures both agronomic and socioeconomic features and a spatial data set with information about land and water use parameters were calibrated in terms of closeness of simulation experiments and farm data at both macro and micro levels validation was then performed by regressing land use results based on the model on actual land use in the data although values of the slope of this regression are reported for both macro and micro levels validation is incomplete for instance microvalidation is only conducted for the year when the simulation starts due to data availability finally the fact that validation was not conducted on data independent from calibration is another important weakness later berger et al applied his mpbased agentbased modeling approach to study the complexity of water uses in chile unfortunately that work still had the same issue on validation schreinemachers et al adopted the mpbased approach to simulate soil fertility and poverty dynamics in uganda and analyze the impact on these of access to shortterm credit and alternative technologies at the heart of the model is a simulation of a farmers decision process crop yields and soil fertility dynamics the decision model is comprised of three parts 1 a set of possible decisions related to agriculture such as growing crops raising livestock and selling and purchasing agricultural products 2 a utility function that determines how much the decisions contribute to the farmers objectives and 3 links among decision variables represented by a set of equations following berger a threestage decision flow is defined that separates agent decisions into investment production and consumption moreover the portion of the model capturing consumption includes econometricallyspecified allocation of farm and nonfarm income to saving food and other expenditures properties of the household agent such as quantity and quality of land labor livestock permanent crops and knowledge of innovation are sampled from empirical distributions based on limited samples additional features include models of animal and tree growth technology diffusion demographics and price changes in technology diffusion peer influence is captured in the same manner as berger but notably each agent is assigned a threshold based on household survey data the model was systematically validated in three steps first econometric models were validated for accuracy then each component was validated independently and finally the system as a whole similar to berger validation used the same data as calibration schreinemachers et al studied the diffusion of greenhouse agriculture using bell pepper in a watershed in the northern uplands of thailand as a case study the work largely follows the mpmas approach due to notably the author proposes calibrating the diffusion thresholds as described in by using a binary adoption model which is estimated from farmer survey data to obtain threshold values for individuals the author first computes adoption probability for each agent based on a set of observable independent variables and then ranks these dividing them into the five categories of innovators due to rogers validation was carried by checking the value of r 2 associated with a regression of observed land use on its predicted value the proposed validation method suffers from the same limitation as other related research in using the same data for calibration and validation schreinemachers et al applied the mpbased approach to study the impact of several agricultural innovations on increasing profitability of litchi orchards in northern thailand unlike schreinemachers et al that estimated a logistic regression model to assign agents to threshold groups they assigned thresholds randomly due to the lack of relevant data the model was validated using regression method as described in schreinemachers et al and validation suggests that the model reasonably represents aggregate agent behavior even while individuallevel behavior is not well captured as in prior work calibration and validation used the same data alexander et al developed an agentbased model of the uk perennial energy crop market to analyze spatial and temporal dynamics of energy crop adoption the model includes the interaction of supply and demand between two agent groups farmers and biomass power plant investors the farmer agents have fixed spatial locations which determine the land quality and climate that in turn impact crop yields and decide on the selection of crops via a twostage approach similar to berger with peer influence again modeled through a threshold function a farmer agent considers adoption only if the proportion of neighbors within a given radius with a positive adoption experience exceeds a threshold when adoption is considered a farm scale mathematical program is used to determine the optimal selection of crops that maximizes utility as described in alexander et al calibration of the farm scale model is either informed by empirical data or in reference to previous studies validation involved checking model behaviors on simplified configurations unittesting of model components and comparing simulation results against empirical data however validation did not use independent data from calibration economic models unlike the mo based models in section 21 the economic models use simpler rules with fewer constraints and decision variables particularly agents commonly simply minimize cost maximize profit or more generally maximize personal utility cost minimization faber et al develop an agentbased simulation model for energy technologies microchp and incumbent condensing boilers in competition for consumer demand consumer agents are classified by housing type which is viewed as the most important factor in determining natural gas requirements for heating units at each time step a consumer considers purchasing a new heating unit and follows a threestep decision algorithm 1 assess if a new unit is needed 2 scan the market for visible heating units where technology awareness is formulated as a function of the level of advertising market share and bandwagon effect and 3 each consumer chooses the cheapest technology of those that are visible the cost which depends on the consumers class is comprised of purchase costs subsidies and use costs over the expected life of the technology some of the parameters are calibrated using empirical data while others are set in an ad hoc fashion some validation was performed through the use of a sensitivity analysis of the variables such as market size progress rate and technology lifetime however no explicit model validation using empirical data was undertaken profit maximization sorda et al develop an agentbased simulation model to investigate electricity generation from combined heat and power biogas plants in germany instead of simulating farmers individual decision whether to invest in a biogas plant the model solves a systemwide optimization problem from the perspective of a global planner the model includes two types of agents information agents including federal government bank electric utility and plant manufacturer and agents making investment decisions including the substrate supplier district decisionmaker and heat consumer the core decisionmaking agent acts as a representative for investors in each community the agent chooses to invest in a biogas facility whenever sufficient resources are available and the investment yields positive net present value this work used multiple data sources to construct the simulation model for example plant operator guidelines and manufacturer specifications were used to obtain data about the characteristics of biogas plants although the model is thus informed by real data it is not quantitatively validated utility maximization broekhuizen et al develop an agentbased model of movie goer behavior which incorporates social influence in movie selection decisions their study investigates two types of social influence the influence of past behavior by others and influence stemming from preferences of an individuals friends such as group pressure to join others in seeing a movie the main purpose of this work is to determine the degree to which different types of social influence impact inequality in their model agents decisionmaking is probabilistic and utilitydriven an agent first observes which movies are being shown in the marketplace with some probability next with a specified probability an agent is selected to consider seeing a movie if selected it goes to the movie that maximizes expected utility among all those it is aware of otherwise it does not see any movie utility in this setting is a weighted sum of individual utility which represents the alignment between individuals preferences and movie characteristics and social utility which is a combination of the two types of social influence above some of the model parameters are either theoretically determined or empirically calibrated while the variability of the rest is investigated by sensitivity analysis validation involved a crossnational survey using crosscultural differences due to hofstedes collectivismindividualism index to measure social influence while the validation is based on an independent survey study it is largely qualitative günther et al introduce an agentbased simulation approach to support marketing activities the proposed model was applied to the study of a new biomassbased fuel that would likely be introduced in austria consumer agents are embedded in a social network where nodes represent agents and edge weights determine the probability with which the connected agents communicate the authors tested several network structures including random networks smallworld networks and socalled preferencesbased networks where connections between agents are based on geographical and cognitive proximity as well as opinion leadership each agent is characterized by preferences geographical position tanking behavior how informed they are about the product and their level of social influence agents have preferences for several product attributes price quality and expected environmental friendliness which are initialized differently based on consumer type agents are geographically distributed in virtual space based on the spatial distribution of austrian population and their tanking behavior is a function of fuel tank capacity travel behavior and habits individual information level on the innovation at hand captures the knowledge about a product which increases as a function of interpersonal communication and exposure to marketing activities influence level on the other hand represents an agents expertise with the innovation and determines the amount of information received through communication upon interaction an agent with lower information level learns from a more informed agent most importantly the utility function for agent i at time t is given by u it × w i1 p rice t × w i2 ppq it × w i3 w i4 where 0 ≤ w ik ≤ 1 and 4 k1 w ik 1 and the first and second weights pertain to price while the last two represent how strongly agents prefer quality and how willing they are to seek renewable energy sources for fuel respectively an agent is assumed to adopt if utility exceeds a specified individual threshold drawn for each agent from the uniform distribution moreover the perceived product quality ppq i is assumed to gradually converge the true product quality for adopters the author briefly mentions that model parameters are set in reference to a prior case study apart from this no detailed information is provided about how model parameters are actually calibrated in the setting moreover the model was only validated qualitatively with subjective expert knowledge holtz and pahlwostl develop a utilitybased agentbased model to study how farmer characteristics affect landuse changes in a region of spain as relevant data are scarce their model cannot be quantitatively calibrated and validated empirical data are used to initialize the model deriving the initial crop distribution and to assess the validity of the model qualitatively in this model an agents utility is formulated as a cobbdouglas function by multiplying four influences gross margin risk labor load and regulatory constraints parameters associated with these influences differ with the types of farmers for example parttime family and businessoriented farmers would have distinct utility parameters in the decision process an agent chooses a land use pattern that maximizes its utility where land use patterns involve a combination of crop and irrigation technology constrained by policies the diffusion of irrigation technology is simulated based on the concept that the more widely used a technology is the more likely it is to be considered by individual farmers their experiments explore the importance of each influence variable in the utility function as well as of farmer types by qualitatively comparing the simulation results with empirical data plötz et al propose a model for the diffusion of electric vehicles to evaluate evrelated policies based driving data in germany the model determines the market shares of different technologies by simulating each driving profile as both ev and conventional vehicle choosing the option which maximizes the drivers utility and then extrapolating these agentlevel choices to aggregate market shares in modeling individual decisions utility is defined as a function of total cost of ownership choice of ev brands and individual willingnesstopaymore the authors combined survey results with driving profiles to derive four categories of agents and assigned each driving profiles to one of these categories through simulating the plugin hybrid electric vehicle share of the market as a function of annual average vehicle kilometers traveled for mediumsized vehicles the model was validated by comparing original group assignment with simulated outcomes and by examining simulated diesel market shares relative to actual values within different branches of industry while validation is quantitative and rigorous it does not use independent data moreover the model does not capture social influence which is often a key aspect of innovation diffusion modeling mccoy and lyons develop an agentbased model of diffusion of electric vehicles among irish households agents representing households are located at a regular lattice space they are heterogeneous as suggested by their characteristics agents have two static attributes income utility and environmental utility drawn independently from empirical distributions derived from a survey in particular iu is based on an agents social class tenure type and age which are assumed to be highly correlated with income whereas eu is based on the agents past adoption of energy efficiency technologies and their attitude toward the environment each agent i has a unique threshold θ i drawn from a distribution that is negatively correlated to iu and adopts if u i ≥ θ i and t × crit ≥ rand where crit is decimal value that is used to account for inertia that exists in early stage of technology adoption while utility u i is defined as u i α i iu i β i eu i γ i g i δ i s where iu represents individuals preferences g is social influence and s is social norms and α i β i γ i δ i 1 to allow these parameters to vary by agent the authors specify four distinct consumer groups with different preferential weighting schemes although the agents in the simulation are initialized using empirical distributions key parameters in the decision model are not derived empirically but are based on the authors assumptions additionally no rigorous validation is provided palmer et al developed an agentbased model of diffusion of solar photovoltaic systems in the residential sector in italy the utility of agent j is defined as the sum of four weighted partial utilities ie u j w pp • u pp w env •u env w inc •u inc w com •u com where k w k 1 for k ∈ k pp env inc com and w k u ∈ 0 1 from left to right the partial utilities are payback period of the investment environmental benefits household income and social influence an agent chooses to invest in pv if its total utility exceeds an exogenously specified threshold thresholds above vary by agents demographic and behavioral characteristics sm j the four partial utilities are derived from empirical data specifically the payback period is estimated based on investment costs local irradiation levels government subsidies net earnings from generating electricity from the system vs buying it from the grid administrative fees and maintenance costs the environmental benefit is based on an estimate of reduced co 2 emissions saved household income is estimated based on household demographics such as age level of education and household type finally social influence is captured by the number of neighbors of a household within its social network who have previously adopted pv the social network among agents is generated according to the smallworld model modified to account for socioeconomic factors the model parameters are calibrated by trying to match simulated adoption with the actual aggregate residential pv adoption in italy over the 20062011 period the model is then applied to study solar pv diffusion in italy over the 20122026 period however no quantitative validation is offered cognitive agent models while both mobased and economic models elaborate economic aspects of the decision process and integrate simple threshold effects cognitive agent models aim to explicitly model how individuals affect one another in cognitive and psychological terms such as opinion attitude subjective norm and emotion this category includes the relative agreement model the theory of planned behavior the theory of emotional coherence and the consumat model relative agreement model the relative agreement model belongs to a class of opinion dynamics models and addresses how opinion and uncertainty are affected by interpersonal interactions seminal work is due to deffuant et al who investigate how the magnitude of thresholds with respect to attitude difference leads to group opinion convergence and extremeness the relative agreement model is often known as deffuant model in the literature deffuant et al design an agentbased model to simulate organic farming conversion in france to model impact of interactions on the individual decision they relied on the deffuant model in which both opinion and uncertainty are continuous variables in the diffusion model farmer agent has an interest state with three possible values notinterested uncertain and interested the actual value is based on the agents opinion and economic consideration the value of the interest state depends on the position of the global opinion segment compared to a threshold value agent changes opinion after discussing with peers using a variant of the relative agreement algorithm the farmers send messages containing their opinions and information following a twostage diffusion model of valente mediated by a network generated according to the watts and strogatz model these impact opinions of the recipients as a function of opinion similarity as well as confidence of the sender with more confident opinions having greater influence in addition if the farmer agent is interested or uncertain he performs an evaluation of the economic criterion and if he remains interested he requests a visit from a technician after this visit the economic criterion is evaluated again under reduced uncertainty finally the adoption decision is made when the farmer has been visited by a technician and remains interested for a given duration many model parameters governing the decision and communication process are not informed by empirical data the authors tested the sensitivity of the model by varying these variables including the main parameters of the dynamics the parameters of the initial opinion distribution average number of neighborhood and professional links and variations of the institutional scenario within this parametric space they aimed to identify parameter zones that are compatible with empirical data for each parameter configuration the authors defined two error measures the adoption error and the error of proximity of adopters to the initial organic farmers a decision tree algorithm was then used to find the parameter zones where the simulated diffusion has an acceptable performance while this sensitivity analysis step can be viewed as model calibration it is distinct from classical calibration which aims at finding a single best parameter configuration the model was not validated using independent data theory of planned behavior the theory of planned behavior postulates that an individuals intention about a behavior is an important predictor of whether they will engage in this behavior as a result the theory identifies three attributes that jointly determine intention attitudes subjective norms and perceived behavioral control the relative contribution for each predictor is represented by a weight which is often derived empirically using regression analysis based on survey data kaufmann et al build an agentbased simulation model on tpb to study the diffusion of organic farming practices in two new european union member states following the tpb methodology each agent is characterized by three attributes the attitude a i subjective norm s i and perceived behavioral control p i each ranging from 1 to 1 the intention i i is defined as i i w a i a i w s i s i w p i p i where w a i w s i w p i are relative contribution toward intention the weights for nonadopters and adopters are derived separately using linear regressions based on the survey data if an agents intention exceeds a threshold t it adopts and does not adopt otherwise the threshold is obtained from survey data as the average intention of nonadopters who have expressed a desire to adopt in the simulation model social influence is transmitted among network neighbors in each time step in a random order specifically when one node speaks to another the receiver shifts its subjective norm closer to the senders intention following the relative agreement framework social networks are generated to reflect smallworld properties and a leftskewed degree distribution noble et al with specifics determined by a set of parameters which are set based on survey data while empirical data is thus used to calibrate parameters of the model no quantitative validation was provided schwarz and ernst propose an agentbased model of diffusion of watersaving innovations and applied the model to a geographic area in germany agents are households with certain lifestyles represented by demographic and behavioral characteristics they use two different decision rules to determine adoption a cognitively demanding decision rule representing a deliberate decision and a simple decision heuristic the particular decision rule to use is selected based on the agents type and technology category the deliberate decisionmaking algorithm is based on multiattribute subjective utility maximization that integrates attitude social norm and perceived behavioral control the heuristic decision rule makes decisions in greedy order of evaluation criteria based on innovation characteristics and social norms finally if no clear decision can be made agents imitate their peers who are defined through a variation of a smallworld network which captures spatial proximity and lifestyle affinity in determining links among agents the model was calibrated using data from a survey according to the framework of the theory of planned behavior with the importance of different decision factors derived by structural equation models or linear regressions for lifestyle groups the model was validated using independent market research data at the household level in addition due to the lack of independent aggregated diffusion data results of the empirical survey were used for validation sopha et al present an agentbased model for simulating heating system adoption in norway their model extends tpb to consider several contributing factors such as household groups intention attitudes perceived behavioral control norms and perceived heating system attributes households are grouped using cluster analysis based on income level and basic values available in the survey data to approximate the influence of lifestyle on attitudes towards a technology attribute parameters are then estimated using regressions for each household cluster based on the household survey moreover motived by the metatheory of consumer behavior the model assumes that a household agent randomly follows one of four decision strategies repetition deliberation imitation and social comparison in accordance with empirical distribution based on survey data notably this model is validated using independent data that is not used for calibration examining how well simulation reproduces actual system behavior at both macro and micro level rai and robinson develop an empirically grounded agentbased model of residential solar photovoltaic diffusion to study the design of pv rebate programs the model is motived by tpb and assumes that two key elements determine adoption decision attitude and control the authors calibrate populationwide agent attitudes using survey data and spatial regression following the opinion dynamics model in deffuant et al at each timestep agents attitudes about the technology and their uncertainties are adjusted through interactions with their social network neighbors following the relative agreement protocol social influence is captured by households situated in smallworld networks with most connections governed by geographic and demographic proximity in the control module an agent i compares its perceived behavioral control pbc i with the observed payback at the current time period p p it then if the agent exceeds its attitude threshold it adopts when p p it pbc i pbc i for each agent i is calculated as a linear sum of financial resources the amount of sunlight received and the amount of roof that is shaded while p p it is calculated based on electricity expenses offset through the use of the solar system the price of the system utility rebates federal investment tax credit and annual system electricity generation the six model parameters used to specify the social network opinion convergence the distribution of the behavioral control variable and the global attitude threshold value were calibrated by an iterative fitting procedure using historical adoption data the model was first validated in terms of predictive accuracy comparing predicted adoption with empirical adoption level for the time period starting after the last date for the calibration dataset moreover temporal spatial and demographic validation were conducted however validation was focused on aggregate rather than individual behavior jensen et al develop an agentbased model to assess energyefficiency impacts of an airquality feedback device in a german city a household agent makes two decisions whether to adopt a feedback device and whether to practice a specific energysaving behavior the model involves simulating both the adoption of the feedback device and the heating behavior respectively two diffusion processes are connected based on the observation that the feedback device changes an agents heating behavior and eventually will form a habit in the simulations household agents are generated based on marketing data on lifestyle and initial adopters of the heating behavior are selected based on a survey the adoption of an energyefficient heating behavior is triggered by external events whose rate is estimated by historical data using google search queries their survey reveals that both information and social influence drive behavior adoption this insight is integrated into a decisionmaking model following the theory of planned behavior in which information impacts the agents attitude in each simulation step on the other hand the diffusion model of the feedback device is an adaptation of an earlier model also based on tpb an adopter of the device is assumed to adopt the desired heating behavior with a fixed probability which is informed by an empirical study the space of model parameters is reduced by applying a strategy called patternoriented modeling which refines the model by matching simulation runs with multiple patterns observed from empirical data in their experiments the authors calibrated several different models using empirical data and aimed to quantify the effect of feedback devices by comparing results generated by these models however no rigorous model validation is presented theory of emotional coherence when it comes to explaining and predicting human decisions in a social context some computational psychology models also take emotional factors into account which are often neglected by tpbbased models wolf et al propose an agentbased model of adoption of electric vehicles by consumers in berlin germany based on the theory of emotional coherence the parameters of the model were derived based on empirical data from focus groups and a representative survey of berlins population in particular the focus group provided a detailed picture of peoples needs and goals regarding transportation the survey was designed to generate quantitative estimates of the beliefs and emotions people associate with specific means of transportation the attributes of the agents include age gender income education residential location lifestyle and a socalled social radius and are obtained based on the survey data the social network structure is generated by similarities between these characteristics following the theory of homophily mcpherson et al specifically the likelihood of two individuals communicating with one other is a function of their similarity in terms of demographic factors to validate the predictions made by the model the authors regressed empirical data related to actual transportationrelated decisions from the survey on the activation parameters resulting from simulations however validation did not use independent data consumat model the consumat model is a social psychological framework in which consumer agents switch among several cognitive strategiescommonly comparison repetition imitation and deliberationas determined by need satisfaction and their degree of uncertainty schwoon uses an agentbased model to simulate possible diffusion paths of fuel cell vehicles capturing complex dynamics among consumers car producers and filling station owners in their model the producers offer heterogeneous but similar cars deciding in each period whether to change production to fcvs consumers have varying preferences for car attributes refueling needs and social influence factors although in a typical consumat approach consumers follow one of four cognitive strategies on the basis of their level of need satisfaction and uncertainty the author rules out repetition and imitation and argues that need satisfaction is rather low in their case the consumer agent is assumed to maximize total expected utility which is expressed as a function of car price tax the closeness between preferences and car characteristics social need as determined by the fraction of neighbors adopting each product type and availability of hydrogen in the model individual preferences may evolve with time to be more congruent with the average car as determined by a weighted average of attributes of cars sold in the previous period where weights correspond to market shares the model is calibrated by trying to match main features of the german auto market the network structure governing social influence is assumed to form a torus the model does not attempt quantitative validation the lara model lara is the short for lightweight architecture for boundedly rational agents a simplified cognitive agent architecture designed for largescale policy simulations comparing with existing complex psychological agent frameworks lara is more generalizable and easier to implement we review two recent efforts motivated by the lara architecture and grounded in empirical data krebs et al develop an agentbased model to simulate individuals provision of neighborhood support in climate change adaptation in their model agents are assigned to lifestyle groups and initialized using spatial and societal data motivated by lara an agent makes a decision in one of three modes deliberation habits and exploration in deliberation an agent compares and ranks available options in terms of utility which is the weighted sum of four goals striving for effective neighborhood support being egoistic being altruistic and achieving social conformity the goal weights which are different among lifestyle groups are set based on expert ratings and the authors prior work a probability choice model is used to choose the final option when multiple better options are available an agent acts in deliberation mode if no experience is available and shifts to an exploratory mode with a predefined small probability the network in which the agents are embedded is generated using lifestyle information simulation runs for an initial period from 2001 to 2010 provide plausible results on behavioral patterns in cases of weather changes from 2011 to 2020 the authors examine the effects of two intervention strategies that mobilize individuals to provide neighborhood support some model parameters remain uncalibrated and the entire model is not validated due to a lack of empirical data at the macro level krebs and ernst develop an agentbased spatial simulation of adoption of green electricity in germany each agent represents a household deciding to select between green and gray energy providers every agent is characterized by its geographical location and lifestyle group agents are initialized and parameterized by empirical data from surveys psychological experiments and other publicly available data following lara agents are assumed to make decisions either in a deliberative or habitual mode default agent behavior is habitual and the agent transitions to a deliberative mode when triggered by internal and external events such as a price change personal communication cognitive dissonance need for cognition and media events an agent chooses an action that maximizes utility which is a weighted sum of four goals ecological orientation economic orientation social conformity and reliability of provision the goal weights depend on the lifestyle group and are derived from a survey and expert rating an artificial network that connects the agents is generated based on lifestyle and physical distance once an agent decides to adopt green electricity it chooses a service brand that is already known the diffusion of the awareness of the brand is characterized by a simple wordofmouth process validation focuses on two state variables of agent behavior selected electricity provider and awareness of the brand which involves comparing simulation results with historical data both temporally and spatially starting from aggregate to the individual level unfortunately validation was not conducted using independent data heuristic models heuristic adoption models are often used when modelers are not aware of any established theories for agent decisionmaking in the studied application these models tend to give us an impression of being adhoc since they are not built on any grounded theories more importantly unlike the cognitive agent models such as the theory of planned behavior there is no established or principled means to estimate model parameters therefore model parameters are often selected in order to match simulated output against a realistic adoption level although heuristicbased model appears to be an inaccurate representation of agent decisionmaking they are easy to implement and interpret van vliet et al make use of a takethebest heuristic to model a fuel transportation system to investigate behavior of fuel producers and motorists in the context of diffusion of alternative fuels in the model producers plant investment decision is determined by simple rules and the same plant can produce multiple fuel types motorists are divided into several subgroups each having distinct preferences each motorist is assumed to choose a single fuel type in a given year each fuel is assigned four attributes driving cost environment performance and reputation motorist preferences in the model are represented by two factors 1 priorities or the order of perceived importance of fuel attributes and 2 tolerance levels which determine how much worse a particular attribute of the corresponding fuel can be compared to the best available alternative to maintain this fuel type under consideration the decision heuristic then successively removes the worst fuel one at a time in the order of attribute priorities due to the difficulty of obtaining actual preferences of motorists the authors used the dutch consumer value dispositions from another published model in literature as a proxy to parameterize the model however the model was not rigorously calibrated or validated using empirical data zhao et al propose a twolevel agentbased simulation modeling framework to analyze the effectiveness of policies such as subsidies and regulation in promoting solar photovoltaic adoption the lowerlevel model calculates payback period based on pv system electricity generation and household consumption subsidies pv module price and electricity price the higherlevel model determines adoption choices as determined by attributes which include payback period household income social influence and advertising a pivotal aspect of the model is the desire for the technology which is formulated as a linear function of these four factors and an agent adopts if the desire exceeds a specified threshold survey results from a prior study were used to derive a distribution for each factor as well as the membership function in a fuzzy set formulation the agents in the model were initialized using demographic data along with realistic population growth dynamics based on census data moreover calibration of threshold value was conducted to match simulated annual rate of pv adoption with historical data however the model was not quantitatively validated using independent data a more complex topsis model is a decision heuristic which selects an option from several alternatives that is the closest to the ideal option and the farthest from the worst possible option kim et al present agentbased automobile diffusion model using a topsis approach to simulate market dynamics upon introduction of a new car in the market the model integrates three determinants of purchasing behavior information offered by mass media relative importance of attributes to consumers and social influence individual agents rank products by considering multiple product attributes and choosing a product closest to an ideal a survey was conducted to estimate consumers weights on the car attributes and the impact of social influence in the simulations diffusion begins with innovators who try out new products before others once they adopt their social network neighbors become aware of these decisions with some deciding to adopt and so on a smallworld network structure was assumed for this virtual market and choices of rewiring and connectivity were determined by the model calibration step through comparing simulated results with historical monthly sales volumes of three car models however the model was not validated using independent data statisticsbased models statisticsbased models rely on statistical methods to infer relative contribution of observable features towards ones decision whether to adopt the estimated model is then integrated into an abm we review three subcategories of statisticsbased methods for agentbased models of innovation diffusion conjoint analysis discrete choice models and machine learning conjoint analysis conjoint analysis is a statistical technique used in market research to determine how much each attribute of a product contributes to consumers overall preference this contribution is called the partworth of the attribute combining with feature values of innovation obtained from field study one can construct a utility function accordingly garcia et al utilize conjoint analysis to instantiate and calibrate an agentbased marketing model using a case study of diffusion of stelvin wine bottle screw caps in new zealand with a particular emphasis on validation the overall work follows carley s four validation steps grounding calibration verification and harmonizing to properly evaluate the model at both micro and macro levels the model includes two agent types wineries and consumers in each period the wineries set the price production level and attributes of screw caps as a function of consumer demand consumers in turn make purchase decisions following their preferences the model is calibrated using conjoint analysis inferring partworths which determine consumer preferences in the model aggregate stylized facts were then replicated in the verification step the work emphasizes the value of calibration but pays less attention to validation which is merely performed at a face level rather than quantitatively vag presents a dynamic conjoint method that enables forecasts of future product preferences the consumer behavior model considers many factors including social influence communication and economic motivations the author surveys behavior of individuals such as their communication habits and uses conjoint analysis to initialize preferences in the abm notably in this model agent priorities depend on one another and the resulting social influence interactions may lead to largescale aggregate shifts in individual priorities to demonstrate the usability of their model the study utilized empirical data on product preferences consumer habits and communication characteristics in a city in hungary calibration of this model was only based on expert opinion and comparative analysis rather than quantitative comparison with real data and no quantitative validation was performed zhang et al develop an agentbased model to study the diffusion of ecoinnovations which in their context are alternative fuel vehicles the model considers interdependence among the manufacturers consumers and governmental agencies in the automotive industry the agents representing manufacturers choose engine type fuel economy vehicle type and price following a simulated annealing algorithm to maximize profit in a competitive environment until a nash equilibrium is reached the consumer agents choose which products to purchase the partworth information in the utility function was derived by choicebased conjoint analysis using an empirical survey from garcia et al in particular the probability of a consumer choosing a vehicle is formulated as a logit function of vehicle attributes wordofmouth and domainspecific knowledge the utility is modeled as a weighted sum of attributes and parameterspartworth are estimated using hierarchical bayes methods the agent acting as government chooses policies aimed at influencing the behavior of both manufacturers and consumers model calibration involved conjoint analysis however the authors found that the abm tended to overestimate the market shares of alternative fuel vehicles which motivated them to adjust model parameters and to linearize the price parthworth in order to ensure that aggregate demand decreases with the price like garcia et al the authors follow the four steps of validation however validation does not use data independent from calibration lee et al introduce an agentbased model of energy consumption by individual homeowners to analyze energy policies in the uk the model utilizes historical survey data and choicebased conjoint analysis to estimate the weight of a hypothetical utility function defined as the weighted sum of attributes in the simulation moving and boiler breakdown events are assumed to trigger a decision by the household agent in this case a particular alternative is selected if its utility is higher than all other alternatives as well as the status quo option the model was populated with initial data based on a survey conducted in the uk and each agent was matched to a household type which can be further mapped to energy demand using energy consumption estimates the authors then combined energy demand with fuel carbon intensity to determine annual household emissions the model was calibrated by adjusting the weights in the decision model to match historic installation rates from 1996 to 2008 for loft insulation and cavity wall insulation the model was not validated using independent data stummer et al devise an agentbased model to study the diffusion of multiple products each product is characterized by a number of attributes determined by expert focus group discussion true performance of each product attribute is unknown to consumers and each agent therefore keeps track of the distribution of attribute values based on information previously received this information is updated based on interactions with peers advertising or direct experience consumer agent behavior is governed by a set of parameters that capture heterogeneous preferences and mobility behavior agents have additive multiattribute utilities the weights of which were obtained from survey data using conjoint analysis the authors adapt the preferential attachment algorithm introduced by to generate networks in which the attachment probability depends on both node degree and geographic distance between nodes network parameters were determined by taking into account additional information revealed in the consumer survey such as the number of social contacts and communication frequency an agent decides to purchase a product which maximizes utility the model defines each advertising event to communicate a set of product attributes which either increase product awareness or impact customer preferences the model was validated extensively following including conceptual validity internal validity microlevel external validity macrolevel external validity and crossmodel validity the weakness of validation however is that it is only performed as an insample exercise without using independent data discrete choice models the discrete choice modeling framework which originates in econometrics is used to describe explain and predict agent choices between two or more discrete alternatives the approach has a wide range of applications and we review several efforts targeted specifically at innovation diffusion galán et al design an agentbased model to analyze water demand in a metropolitan area this model is an integration of several submodels including models of urban dynamics water consumption and technological and opinion diffusion the opinion diffusion model assumes that an agents attitude towards the environment determines its water consumption ie an nonenvironmentalist would use more water than an environmentalist accordingly it is assumed that each agent can be in two states environmentalist or nonenvironmentalist the choice of a state depends on the agents current state the relative proportion of e and ne neighbors and an exogenous term measuring the pressure towards e behavior transition probabilities between states e and ne are given in form of logistic functions however rather than using empirical data to estimate parameters of these functions the authors parameterized the behavior diffusion model with reference to models in prior literature for other european cities to determine adoption of watersaving technology the opinion diffusion model is coupled with the technological diffusion model which is implemented by a simple agentbased adaptation of the bass model following the model was validated qualitatively by domain experts quantitatively calibrated based on the first quarter of 2006 and validated by comparing the model with actual adoption in the following two quarters the authors demonstrate that simulation results successfully replicate the consequence of a watersaving campaign on domestic water consumption dugundji and gulyás propose a computational model that combines econometric estimation with agentbased modeling to study the adoption of transportation options for households in a city in netherlands the presented discrete choice modeling framework aims to address interactions within different social and spatial network structures specifically agent decision is captured using a nested logit model which enables one to capture observed and unobserved behavior heterogeneity feedback effects among agents are introduced by adding a linear term that captures proportions of an agents neighbors making each decision to each agents utility function because survey data on interactions between identifiable individuals was unavailable this term only captured aggregate interactions among socioeconomic peers the authors investigated simulated transition dynamics for the full model with two reference models the first a nested logit model with a global field variable only and a fully connected network and the second a multinomial logit model which is a special case to the full model they found that simulated dynamics differ dramatically between the models given this lack of modeling robustness no further validation was undertaken tran develops an agentbased model to investigate energy innovation diffusion agent behavior in this model is determined by the relative importance of technology attributes to the agents and social influence social influence in turn takes two forms indirect influence coming from the general population and direct influence of social network neighbors the author drew on abm studies in the marketing literature and formulated the adoption model as kij where p ij captures individual choice using a discrete choice model of consumer decisionmaking in which an agents utility is defined as an inner product of coefficients and attributes coefficients are a random vector with distribution different for different agents capturing preference heterogeneity q ij and k ij is the indirect and direct network influence respectively captured as a function of the number of adopters at decision time while the model was evaluated using simulation experiments and the nature of the model makes it well suited for empirically grounded parameter calibration it was not in actuality quantitatively calibrated or validated using empirical data p rob 1 machine learning models machine learning is a subarea of computer science that aims to develop algorithms that uncover relationships in data within a supervised learning paradigm which is of greatest relevance here the goal is further to develop models that accurately predict the value of an outcome variable for unseen instances to do so a computer program is expected to recognize patterns from a large set of observations referred to as a training process that is grounded in statistical principles and governed by intelligent algorithms and make predictions on new unseen instances this category of methods has recently drawn much attention in academia and industry due to tremendous advances in predictive efficacy on important problems such as image processing and autonomous driving combining machine learning with agentbased modeling seems promising in the study of innovation diffusion since the two can complement each other the former is specialized in building a highfidelity predictive models while the latter captures dynamics and complex interdependencies of particular relevance to combining ml and abm is the application of machine learning to model and predict human behavior interestingly relatively few attempts have been made to date to incorporate mlbased models of human behavior within abm simulations sun and müller develop an agentbased model that features bayesian belief networks and opinion dynamics models to model landuse dynamics as they relate to payments for ecosystem services the decision model of each household is represented using a bbn which were calibrated using survey data and based on discussions with relevant stakeholders and incorporate factors such as income and land quality social interactions in decisionmaking are captured by odm the modeling framework was applied to evaluate chinas sloping land conversion program considered among the largest pes programs slcp was designed to incentivize reforestation of land through monetary compensation in their model farmers make landuse decisions whether or not to participate in the slcp program based on internal beliefs and external influences external influences adjust internal beliefs cumulatively using a modified deffuant model within a communitybased smallworld social network initial model structures were obtained using a structural learning algorithm with results augmented using qualitative expert knowledge resulting in a pseudo treeaugmented naive bayesian network the final bbn model was validated by using a sensitivity analysis and measuring prediction accuracy and area under the curve of the receiver operating characteristics curve on a holdout test data set at both household and plot level a crucial limitation of this work is that only the bbn model was carefully validated the authors did not validate the full simulation model at either the micro or macro levels zhang et al propose a datadriven agentbased modeling framework for modeling residential rooftop solar photovoltaic adoption in san diego county in this framework the first step is to use machine learning to calibrate individual agent behavior based on data comprised of individual household characteristics and pv purchase decisions these individual behavior models were validated using crossvalidation methods to ensure predictive efficacy on data not used for model calibration and were then used to construct an agentbased simulation with the learned model embedded in artificial agents in order to ensure validation on independent data the entire time series data of individual adoptions was initially split along a time dimension training and crossvalidation for developing the individuallevel models were performed only on the first portion of the dataset and the aggregate model was validated by comparing its performance with actual adoptions on the second independent time series into the future relative to the calibration data set the authors thereby rigorously demonstrate that the resulting agentbased model is effective in forecasting solar adoption both at the micro and macro levels to our best knowledge this work proposed the first generic principled framework that combines ml and abm in study of innovation diffusion unlike most abm studies we have reviewed ddabm has the following features 1 it does not make any assumptions on the structural features of social network relying entirely on a datadriven process to integrate most predictive spatial and social influence features into the individual adoption model 2 it does not rely on matching simulated dynamics with the empirical observations to calibrate the model but instead parameterizes the model through a far more efficient statistical learning method at the level of individual agent behavior and 3 validation is performed on independent data to evaluate the predictive effectiveness of the model moreover validation is not only done at the macrolevel by comparison with actual adoption traces but also at the microlevel by means of the simulated likelihood ratio relative to a baseline model to further justify the usefulness of mlbase approach zhang et al actually implement and compare their model with another agentbased model of rooftop solar adoption developed by with parameters calibrated on the same dataset following the general aggregatelevel calibration approach used by them the result is very revealing as it strongly suggests that aggregatelevel calibration is prone to overfit the model to data an issue largely avoided by calibrating individual agent behavior social influence models our last methodological category covers several models looking specifically at social influence these models are quite simple abstract but prevalent in the theoretical study of innovation diffusion our purpose of discussing these is that there have been several recent efforts to calibrate these models using empirical data after analyzing an adoption dataset of skype karsai et al develop an agentbased model to predict diffusion of new online technologies specifically agents in their model are characterized by three states susceptible adopter and removed susceptible refers to people who may adopt the product later adopter agents have already adopted finally removed are those who will not consider adopting the product in the future again the transition from s to a is regulated by spontaneous adoption and peerpressure from a to s by temporary termination and from a to r by permanent termination each of which is parametrized by a constant probability which is identical for all users while some parameters such as average degree and temporary termination probability are estimated directly from observations the remaining parameters are determined by simultaneously fitting the empirical rates using a bounded nonlinear leastsquares method the model is fit over a 5year training period and validation uses predictions over the last six months of the observation period however validation is somewhat informal since the predictability of the model is evaluated on a part of the training data and there is no validation of microbehavior in a later work using the same skype data karsai et al develop a thresholddriven social contagion model with only two states susceptible and adopted in addition the model assumes that some fraction of nodes never adopt the authors calibrated the value of this fraction by matching the size of the largest component of adopters given by the simulations with real data in addition the model assumes that susceptible nodes adopt with a constant probability which is informed by empirical analysis in their simulations nodes have heterogeneous degrees and thresholds which follow empirical distributions however validation was not performed using independent data herrmann et al present two agentbased models of diffusion dynamics in online social networks the first abm is motivated by the bass model but time is discretized and each agent has two states unaware and aware at each time step an unaware agent changes state to aware as a function of two triggers innovation arising from exogenous sources such as advertising and imitation which comes from observing decisions by neighbors the second model termed the independent cascade model originating from goldenberg et al has a similar structure to the agentbased bass model except that the imitation effect is formulated as a single probability with which each aware neighbor can independently change the state of an agent to aware the author applied the two models in parallel to four diffusion data sets from twitter and calibrated parameters using actual aggregate adoption paths notably validation is only performed at macrolevel as an insample exercise and shows that the two models behave similarly using historical diffusion data of facebook apps trusov et al introduce an approach that applies bayesian inference to determine a mixture of multiple network structures notice that most abms we reviewed so far either assume a single underlying social network or generate artificial networks based on empirical findings or social science theories they first choose a collection of feasible networks that represent the unobserved consumer networks then a simple sir model is used to simulate the diffusion of products the simulated time series are further transformed to multivariate stochastic functions which provide priors to the bayesian inference model to obtain the posterior weights on the set of feasible consumer networks like herrmann et al the adoption model is calibrated from the aggregate output rather than from observations of individual decisions chica and rand propose an agentbased framework to build decision support system for wordofmouth programs they developed a dss to forecast the purchase of a freemium app and evaluate marketing policies such as targeting and reward the model captures seasonality of user activities by two probabilities for weekday and weekend respectively the initial social network is generated by matching the degree distribution of the real network then for each node two weights are assigned to inand outedges respectively turning the network into a weighted graph that represents the heterogeneous social influence among social neighbors specifically two models are used to model the information diffusion one is the bassabm the other is a contagion model the parameters of the model were calibrated by a genetic algorithm in which the fitness is defined based on the difference of simulated adoption from the historical adoption trajectory notably the model was validated by a holdout dataset which is independent of the training data for example the entire 3 month period spanned by the data was divided into two first 60 days for training the last 30 days for validation the independent cascade model used by herrmann et al and the threshold model used by chica and rand are significant insofar as these connect to a substantial literature that has recently emerged within the computer science community on information diffusion whereby information spreads over a social network we make this connection more precisely in section 4 below categorization of innovation diffusion models by application thus far we followed a categorization of agentbased models of innovation diffusion focused on methods by which agent behavior is modeled first we observe that methods range from sophisticated mathematical optimization models to economic models to even simpler models based on heuristics for representing agent behavior while economic factors are dominant concerns in some applications others emphasize the cognitive aspects of human decisionmaking and are frequently used to model influence over online social networks second we note that the method chosen to capture agent behavior also impacts the techniques used to calibrate model parameters from data for example cognitive models are often constructed based on detailed behavior data collected from field experiments and surveys whereas models of agent behavior based on statistical principles rely on established statistical inference techniques for model calibration based on individual behavior data that is either observational or experimental other modeling approaches within our six broad categories often do not use data to calibrate individual agent behavior opting instead to tune model parameters in order to match aggregate adoption data we now offer an alternative perspective to examine the literature on empirical abms of innovation diffusion by considering applicationsthat is what particular innovation is being modeled a breakup of existing work using this dimension is given in table 2 as shown in the first column we group applications by broad categories agricultural innovations and farming sustainable energy and conservation technologies consumer technologies and innovations information technologies and social goods interestingly the first two categories account for more than half of the publications in literature this likely reflects the history of abm as an interdisciplinary modeling framework for computational modeling of issues that are of great interest in social science a closely related factor could be the relatively high availability of data in these applications generated by social scientists another interesting observation that arises is methodological convergence for given applications relatively few applications have been modeled within different methodological frameworks as categorized above future research may explore the use of different methods for same application furthermore comparison of different modeling methods is rare within a single work although such a methodological crossvalidation is of importance as emphasized by some authors information diffusion models online social networks have emerged as an crucial medium of communication it does not only allow users to produce exchange and consume information at an unprecedented scale and speed but also speeds the diffusion of novel and diverse ideas the emergence of online social networks and advances in data science and machine learning have nourished a new field information diffusion the fundamental problem in information diffusion is to model and predict how information is propagated through interpersonal connections over social networks using largescale diffusion data in fact several authors have reviewed the topic of information diffusion over online social networks our aim is not to provide a comprehensive review of this same topic instead we are interested in building connections between the agentbased modeling approach to innovation diffusion and the modeling methods in the field of information diffusion indeed researchers in the abm community have paid little attention to the existing methods for modeling information diffusion and especially in the played by data science in this field which has significant implications for abm model calibration as we discuss below two basic models of information diffusion compared to agent adoption models in section 2 the decision process in the information diffusion literature is typically very simple following predominantly the social influence models the two most common models in information diffusion are independent cascades and linear threshold models these models are defined on directed graphs where activation is assumed to be monotonic once a node is active it cannot become inactive the diffusion process in both models starts with a few active nodes and progresses iteratively in a discrete and synchronous manner until no new nodes can be infected specifically in each iteration a new active node in the ic model is given a single chance to activate its inactive neighbors independently with an exogenously specified probability in the lt model in contrast an inactive node will become active only if the sum of weights of its activated neighbors exceeds a predefined nodespecific threshold which is typically randomly assigned between 0 and 1 for each network node note that in both models a newly activated node becomes active immediately in the next iteration from an agentbased perspective both ic and lt are generative models which define two diffusion mechanisms learning information diffusion models several efforts use empirical data to calibrate the parameters of the lt and ic models saito et al propose an asynchronous ic model which not only captures temporal dynamics but also node attributes they show how the model parameters can be estimated from observed diffusion data using maximum likelihood estimation the asic model closely follows the ic model but additionally introduces a time delay before a newly activated node becomes active the time delay is assumed to be exponentially distributed with a parameter that is defined as an exponential function of a feature vector the transmission probability is then defined as a logit function of the feature vector the data is given in the format of diffusion traces and each trace is a sequence of tuples which specify activation time for a subset of nodes to learn the model using this data the authors define the loglikelihood of the data given the model the authors then demonstrate how to solve the resulting optimization problem using expectationmaximization while the proposed model is promising to be used for prediction the learning method was only tested using synthetic data guille and hacid show how to parameterize the asic model using machine learning methods based on twitter data in their model the diffusion probability for information at any given time between two users is a function of attributes from three dimensions social semantic and time which group features with respect to social network content and temporal property respectively four different classifiers were trained and compared in terms of crossvalidation error c45 decision tree linear perceptron multilayer perceptron and bayesian logistic regression the last model mentioned above was finally used for prediction notably timedelay parameter was determined separately in this work by comparing simulation results with actual diffusion dynamics which is the same calibration method commonly used in abm of innovation diffusion unlike where all model parameters are inferred by mle here only a subset of model parameters are estimated through established machine learning techniques but the rest are calibrated by simulations their evaluation shows that the model accurately predicts diffusion dynamics but fails to accurately predict the volume of tweets in our abm jargon the model performs well at macrolevel but poorly at microlevel validation another limitation of this work is that validation is only performed as an insample exercise rather than using outofsample data galuba et al propose two diffusion models with temporal features that are used to predict user retweeting behaviors on twitter both models define the probability for a user to retweet a given url to be a product of two terms one is timeindependent the other is timedependent both have the same timedependent part which follows a lognormal distribution but differ in the actual definitions of the timeindependent part in their first model termed atleastone the timeindependent component is defined as the likelihood of at least one of the causes either one is affected by the agent it follows or by the user tweets a url spontaenously the second linear threshold model posits that a user retweets a url only if the cumulative influence from all the followees is greater than a threshold the timeindependent component in this model is given by a sigmoid function in order to calibrate and validate the model the data set was split along the time dimension into two parts the model was calibrated by choosing parameters that optimize the estimated fscore using the gradient ascent method on the first data set and used to predict url mentions in the second data set their results show that the lt model achieves the highest fscore among all models and correctly predicts approximately half of url mentions with lower than 15 false positives while all research reviewed so far assumes known network structure a number of efforts deal with hidden network structures which must also be learned from data the socalled network inference problem is to infer the underlying network given a complete activation sequence gomez rodriguez et al introduce a variant of the independent cascade model adding time delay their problem is to find a directed graph with at most k edges that maximizes the likelihood of a set of cascades for a given transmission probability and parameters of the incubation distribution which is solved approximately using a greedy algorithm myers and leskovec propose a cascade model which is similar to gomez rodriguez et al but allows distinct transmission probabilities for different network edges the goal is to infer the adjacency matrix that maximizes the likelihood given a set of cascades which is accomplished by solving a convex optimization problem derived from the problem formulation gomez rodriguez et al develop a continuoustime diffusion model that unifies the twostep diffusion process involving both a transmission probability and time delay from gomez rodriguez et al and myers and leskovec the pivotal value is the conditional probability for a node i to be infected at time t i given that a neighboring node j was infected at time t j which is formulated as a function of the time interval and parametrized by a pairwise transmission rate α ji survival analysis is used to derive the maximum likelihood function given a set of cascades and they aim to find a configuration of all transmission rates that maximizes the likelihood while most network inference algorithms assume static diffusion networks gomez rodriguez et al address a network inference problem with a timevarying network the resulting inference problem is solved using an online algorithm upon formulating the problem as a stochastic convex optimization bridging information diffusion models and agentbased modeling of innovation diffusion the methodological framework of the information diffusion inference problems discussed above is a natural fit for principled datadriven agentbased modeling the information diffusion models characterized by transmission probabilities and time delay are essentially agentbased models given data of diffusion cascades they can be constructed either using only the temporal event sequence or using more general node features social network content and any other explanatory or predictive factors in fact abm researchers have started to apply similar statistical methods to develop empirical models notably as shown by zhang et al parametric probabilistic models of agent behavior can be estimated from observation data using maximum likelihood estimation methods in addition the approaches for network inference appear particularly promising in estimating not only behavior for a known fixed social influence network but for estimating the influence network itself as well as the potentially heterogeneous influence characteristics a crucial challenge in translating techniques from information diffusion domains to innovation diffusion is that in the latter only observes a single partial adoption sequence rather than a collection of complete adoption sequences over a specified time interval as a consequence the fully heterogeneous agent models cannot be inferred although the likelihood maximization can still be effectively formulated by limiting the extent of agent heterogeneity in addition the assumptions generally made in information diffusion models can also pose serious challenges to the transferability of the approach to agentbased modeling recall that the information cascade models often assume that an adopter has a single chance to affect its inactive neighbors and a nonadopter is affected by its neighboring adopters independently these assumptions simplify the construction of the likelihood function but further justification is needed for them especially when building empirical models that are expected to faithfully represent realistic social systems and diffusion processes note that rules that govern the interactions in agentbased models are quite flexible and can be very sophisticated which is also one of the major advantages of agentbased computing over analytical models although one may be able to explicitly derive a parametric likelihood function given diffusion traces in more complex settings than existing information diffusion models do this is sure to be technically challenging moreover solving the resulting mle can be computationally intractable therefore to take advantage of mle approach in information diffusion abm researchers must make appropriate assumptions on agent interactions so that they can derive tractable likelihood functions without significantly weakening the models explanatory and predictive power discussion validation in agentbased modeling as agentbased modeling is increasingly called for in service of decision support and prediction it is natural to expect them to be empirically grounded an overarching consideration in empirically grounded agentbased modeling is how data can be used in order to develop reliable models where reliability is commonly identified with their ability to accurately represent or predict the environment being modeled this property of reliability is commonly confirmed through model validation in social science a number of authors have contributed to the topic of validation from approaches for general computational models to those focused on agentbased simulations to specific types of agentbased models outside of social science validation of simulation systems has an even longer history of investigation we now briefly review these approaches as previously mentioned carley suggests four levels of validation grounding calibration verification and harmonizing grounding establishes reasonableness of a computational model including face validity parameter validity and process validity calibration establishes models feasibility by tuning a model to fit empirical data verification demonstrates how well a models predictions match data and harmonization examines the theoretical adequacy of a verified computational model more recently drawing on formal model verification and validation techniques from industrial and system engineering for discreteevent system simulations xiang et al suggest the software implementation of agentbased model has to be verified with respect to its conceptual model and highlight a selection of validation techniques from banks such as face validation internal validation historical data validation parameter variability predictive validation and turing tests moreover they suggest the use of other complementary techniques such as modeltomodel comparison and statistical tests for agentbased models in economics fagiolo et al proposed three different types of calibration methods the indirect calibration approach the werkerbrenner empirical calibration approach and the historyfriendly approach for example garcia et al adopt the last approach to an innovation diffusion study in new zealand winery industry using conjoint analysis to instantiate calibrate and verify the agentbased model qualitatively using stylized facts for agentbased models in marketing rand and rust suggest verification and validation as two key processes as guidelines for rigorous agentbased modeling the use of term verification follows common understanding in system engineering in particular the authors identify four steps for validation microface validation macroface validation empirical input validation and empirical output validation using stylized facts realworld data and crossvalidation note that the proposed validation steps echo the framework by carley the first two steps correspond to grounding the third to calibration and the fourth roughly combines verification and harmonization however the crossvalidation method mentioned in rand and rust appears to suggest validation across models whereas carley suggests validation across multiple data sets the latter is consistent with the use of crossvalidation in statistical inference and machine learning focusing specifically on empirically grounded abms we suggest two pivotal steps in ensuring model reliability in a statistical sense calibration and validation by calibration we mean the process of quantitatively fitting a set of model parameters to data whereas validation means a quantitative assessment of the predictive efficacy of the model using independent data that is using data which was not utilized during the calibration step moreover insofar as a model of innovation diffusion is concerned with predicting future diffusion of an innovation we propose to further split the dataset along a temporal dimension so that earlier data is used exclusively for model calibration while later data exclusively for validation starting with this methodological grounding we now proceed to identify common issues that arise in prior research on empirically grounded agentbased models of innovation diffusion issues in model calibration and validation agentbased modeling research has often been criticized for lack of accepted methodological standard hindering its acceptance in top journals by mainstream social scientists one notable protocol due to richiardi et al highlight four potential methodological pitfalls link with the literature structure of the models analysis and replicability a careful examination of the empirical abm work on innovation diffusion through this protocol suggests that most of these issues have been addressed or significantly mitigated for example nearly all of the reviewed papers present theoretical background related work sufficient description of model structure sensitivity analysis of parameter variability a formal representation and public access to source code in spite of these improvements however there are residual concerns about systematic quantitative calibration and validation using empirical data we observe that different agent adoption models are calibrated differently in the case of cognitive agent models such as the theory of planned behavior and theory of emotional coherence the individual model parameters are often estimated using survey data similarly statisticsbased models can be parametrized using either experimental or observational individuallevel data on the other hand for conceptual models such as heuristic and economic models calibration is commonly done by iteratively adjusting parameters to match simulated diffusion trajectory to aggregatelevel empirical data formally we call the first kind of calibration microcalibration as it uses individual data during calibration whereas the second type macrocalibration as it uses aggregatelevel data moreover in many studies simulation parameters are determined using both microand macrocalibration for example since network structure is often not fully observed and rules that govern agent interactions are assumed parameters of these are commonly macrocalibrated our first concern is about macrocalibration issue i potential pitfalls in macrocalibration when a model has many parameters overfitting the model to data becomes a major concern friedman et al bishop as carley suggests any model with sufficient parameters can always be adjusted so that some combination of parameters generates the observed data therefore large multiparameter models often run the risk of having so many parameters that there is no guarantee that the model is doing anything more than curve fitting interestingly the issue of overfitting may even be a concern in macrocalibration when only a few parameters need to be calibrated the reason is that agentbased models are highly nonlinear and even small changes in several parameters can give rise to substantially different model dynamics this issue is further exacerbated by the fact that macrocalibration makes use of aggregatelevel data which is often insufficient in scale for reliable calibration of any but the simplest models as many parameter variations can give rise to similar aggregate dynamics addressing the issue requires greater care and rigor in applying macrocalibration one possibility is that instead of choosing only a single parameter configuration to select a parameter zone using a classifier such as decision trees or other machine learning algorithms subsequently the variability of parameters within this zone can be further investigated using sensitive analysis another potential remedy is that instead of using only a single target statistic to use multiple indicators a relevant strategy to build agentbased models in the field of ecology is termed patternoriented modeling which utilizes multiple patterns at different scales and hierarchical levels observed from real systems to determine the model structure and parameters in addition there are more advanced and robust techniques that can improve the rigor of macrocalibration the modeling framework in and statistical inference methods introduced in section 4 propose methods which integrate micro and macro calibration into a single maximum likelihood estimation framework through wellestablished methods in machine learning such as crossvalidation one can expect to parameterize a highlypredictive agentbased model and minimize the risk of overfitting indeed a fundamental feature of any approach should be to let validation ascertain the effectiveness of macrocalibration in generalizing beyond the calibration dataset this brings us to the second common issue revealed by our review lack of validation on independent data issue ii rigorous quantitative validation on independent data is uncommon a common issue in the research we reviewed is that validation is often informal incomplete and even missing the common reason for incomplete datadriven validation is that relevant data is simply unavailable however so long as data is available for calibrating the model one can in principle use this data for both calibration and validation steps for example following crossvalidation methods commonly utilized in machine learning several efforts seek to standardize the validation process for agentbased models and computational models in general however few papers discussed explicitly follow any formalized validation approaches in this literature although important exceptions exist issue iii few conduct validation at both microlevel and macrolevel there has been some debate about whether validation should be performed at both microand macrolevel while arguments against the dualverification often emphasize greater importance of model accuracy at the aggregate level we argue that robust predictions at the aggregate level can only emerge when individual behavior is accurately modeled as well particularly when policies that the abm evaluates can be implemented as modifying individual decisions statisticsbased models such as machine learning have wellestablished validation techniques which can be leveraged to validate individuallevel models one widelyused technique in machine learning and data mining is crossvalidation a common use of crossvalidation is by partitioning the data into k parts with training performed on k 1 of these and testing on the kth the results are then averaged over k independent runs using each of the parts as test data observe that such a crossvalidation approach can be used for models of individual behavior that are not themselves statisticallydriven such as models based on the theory of planned behaviors unfortunately few of the surveyed papers with the exception of statisticsbased models use crossvalidation issue iv few conduct validation of forecasting effectiveness on independent future data one limitation of crossvalidation techniques as traditionally used is that they provide an offline assessment of model effectiveness to assess the predictive power of dynamical systems the entire model has to be validated in terms of its ability to predict future data relative to what was used in calibration we call this notion forward validation in particular forward validation must assess simulated behaviors against empirical observations at both individual and aggregate levels with an independent set of empirical data this can be attained for example by splitting a timestamped data set so that calibration is performed on data prior to a split date and forward validation is done on data after the split date in this review we do observe several approaches that are validated on independent data but these either are not looking forward in time relative to the calibration data or only focus on macrolevel validation a common argument for the use of insample data for the forward validation is that new data is not available while the modeling task is undertaken notice however that any data set that spans a sufficiently long period of time can be split along the time dimension as above to effect rigorous forward validation recommended techniques for model calibration and validation we have identified several issues in calibration and validation which commonly arise in the prior development of empirical agentbased models for innovation diffusion and briefly discussed possible techniques that can help address these issues we now summarize our recommendations multiindicator calibration when macrocalibration is needed the use of multiple indicators can help address overfitting whereby a model which appears to effectively match data in calibration performs poorly in prediction on unseen data we suggest that such indicators are developed at different scale and hierarchical levels so that models which cannot effectively generalize to unseen data can be efficiently eliminated maximum likelihood estimation when individuallevel data are available we recommend constructing probabilistic adoption models for agents and estimating parameters of these models by maximizing a global likelihood function and research discussed in section 42 doing so offers a principled means of calibrating agent behavior models from empirical data cross validation this approach is widely used for model selection in the machine learning literature here we recommend it for both microcalibration and microvalidation of abms note that it does not only apply to statisticsbased models but can be used for any agent modeling paradigm where model parameters are calibrated using empirical data the use of crossvalidation in calibration can dramatically reduce the risk of overfitting moreover as it inherently uses independent data such validation leads to more rigorous abm methodology forward validation this method involves splitting data into two consecutive time periods the modeler calibrates an agentbased model using data from the first period and assesses the predictive efficacy of the model in the second period more rigorously validation of the model should be evaluated at both individual and aggregate levels conclusions we provided a systematic comprehensive and critical review of existing work on empirically grounded agentbased models for innovation diffusion we offered a unique methodological survey of literature by categorizing agent adoption models along two dimensions methodology and application we identified six methodological categories mathematical optimization based models economic models cognitive agent models heuristic models statisticsbased models and social influence models they differ not only in terms of assumptions and elaborations of human decisionmaking process but also with respect to calibration and parameterization techniques our critical assessment of each work focused on using data for calibration and validation and particularly performing validation with independent data we briefly reviewed the most important work in the closely related literature on information diffusion building connections between the innovation and information diffusion approaches one particularly significant observation is that information diffusion methods rely heavily on machine learning and maximum likelihood estimation approaches and the specific methodology used can be naturally ported to innovation diffusion abms drawing on prior work in validation of computational models we discussed four main issues for existing empirically grounded abm studies in innovation diffusion and provided corresponding solutions on balance recent developments of empirical approaches in agentbased modeling for innovation diffusion are encouraging although calibration and validation issues remain in many studies a number of natural solutions from data analytics offer promising directions in this regard the ultimate goal of empirically grounded abms is to provide decision support for policy makers and stakeholders across a broad variety of innovations helping improve targeted marketing strategies and reduce costs of successful translation of highimpact innovative technologies to the marketplace acknowledgments this work was partially supported by the us department of energy office of energy efficiency and renewable energy under the solar energy evolution and diffusion studies program the national science foundation and the office of naval research

innovation diffusion has been studied extensively in a variety of disciplines including sociology economics marketing ecology and computer science traditional literature on innovation diffusion has been dominated by models of aggregate behavior and trends however the agentbased modeling abm paradigm is gaining popularity as it captures agent heterogeneity and enables finegrained modeling of interactions mediated by social and geographic networks while most abm work on innovation diffusion is theoretical empirically grounded models are increasingly important particularly in guiding policy decisions we present a critical review of empirically grounded agentbased models of innovation diffusion developing a categorization of this research based on types of agent models as well as applications by connecting the modeling methodologies in the fields of information and innovation diffusion we suggest that the maximum likelihood estimation framework widely used in the former is a promising paradigm for calibration of agentbased models for innovation diffusion although many advances have been made to standardize abm methodology we identify four major issues in model calibration and validation and suggest potential solutions

introduction cardiovascular disease is the leading cause of morbidity and mortality worldwide 12 and carries a high economic burden 3 to reduce the significant health and economic burden associated with cvd prevention can be improved by identifying and intervening upon factors that increase the risk of cvd poor social health is one possible factor that warrants further exploration in 2016 a systematic review of 23 studies concluded that individuals with poor social health were 30 more likely to experience coronary heart disease and stroke events 4 social health refers to an individuals ability to form satisfying and meaningful relationships their ability to adapt in social situations and their interactions with and perceived support from other people institutions and services social health is often conceptualised into the constructs of social isolation social support and loneliness social isolation is an objective measure of the lack of social relationships or infrequent social contact with others while social support is a subjective measure of the actual or perceived availability of resources from others and loneliness is a subjective negative feeling of being isolated 5 poor social health also imposes a large economic burden in australia the estimated economic cost of loneliness is aud 17 billion through absenteeism caring lost productivity and employee turnover 6 however this estimate does not take into account the additional burden from poor social health on the health care system through more general practitioner visits medication use accident and emergency service use outpatient appointments hospital stays and nursing home admissions 78 part of the high healthcare use is due to the increased health consequences associated with loneliness however part of it is due to lonely people being more likely to seek medical assistance to satisfy their need for interaction and interpersonal stimulation 9 there are a number of conceptual frameworks illustrating the underlying associations between social health and health 10 11 12 13 14 15 16 as described by ong et al 16 the health impacts of these underlying associations with social health may be most apparent in later life the broad pathway tends to be from social health through sociodemographics the sociological environment and chronic disease riskfactors leading to chronic mental and physical illhealth and mortality particularly relevant to our study xia li 15 detail the molecular mechanisms along the pathway from social isolation and loneliness to cvd howick et al 11 provides evidence that the direction from strong and supportive social relationships is a causal factor for better health and longevity however each component is often linked with bidirectional arrows indicating that the pathway is not clear with health and social relationships interacting to influence each other in virtuous circles or spirals of despair 11 the bidirectional arrows are also present in hodgson et al s 10 conceptual framework of the mechanisms linking social health to cardiovascular disease which is specifically relevant to our study the bidirectional arrows in the conceptual frameworks account for the health selection model which explains how deterioration in health may limit or reduce social involvement it is also important to understand the upstream determinants of poor social health such as personality 17 maladaptive premorbid personality is associated with difficult interpersonal relationships and also impedes adaptive health behaviour through adverse lifestyle habits and higher rates of nonadherence to medication personality disorder is thus linked to higher medical comorbidity historically the social health domains of social isolation lack of social support and loneliness have been conflated or measured conjointly however more recently research has highlighted that social isolation social support and loneliness need to be considered as distinct yet interconnected concepts 18 and assessed individually and simultaneously 19 as different social health constructs are likely to have different implications for health and wellbeing 5 due to the historical conflation of social health domains there is a limited understanding of how these domains individually influence cvd risk a recent synthesis of existing literature has provided a conceptual framework of the mechanisms linking loneliness and social isolation to cardiovascular disease however the authors stated that a direct comparison between the social health constructs were not possible due to limited published data 10 compared to other cvd risk factors such as elevated cholesterol or blood pressure diabetes significant family history smoking poor nutrition physical inactivity adiposity and depression understanding of the link between social health and cvd is limited to develop effective preventive interventions and guide costeffective policy a clear understanding of the extent to which social isolation social support and loneliness each influence cvd is required and how social health measures interact is important for identifying the most vulnerable populations for intervention the risk of poor social health becomes greater as we age with a steep rise in poor social health among those aged 80 years or more 72021 older age can be seen as a time to enjoy life and undertake activities that have been put off due to other pressures however the reality is that it can also be a challenging stage of life with the occurrence of negative life events and adjustment to life change while some people choose to retire others may enter retirement due to redundancy and encounter financial strain earlier than expected it may be a time that calls for downsizing or moving house increased responsibility such as care giving or financial planning may be tiring death of a partner relative or close friend whether it is a sudden event or is preceded by prolonged disability can have devastating emotional andor financial consequences loss of independence such as disqualification of a driving license may be confronting and limit the availability of convenient transport disability arising from agerelated health conditions including cognitive decline affects the opportunity to engage socially and can trigger loneliness we aimed to assess social isolation low social support and loneliness as predictors of incident cvd in addition to established risk factors assessed by current cvd risk prediction models we utilised a large contemporary cohort of healthy communitydwelling australians aged 70 years and over who were free of cvd at baseline who were followed for an average of five years having a healthy sample reduces the likelihood of reverse causality where a prior cvd other chronic disease or preceeding symptoms could lead to poor social health 22 notably this is the first assessment of loneliness as a predictor of cvd incidence among adults aged 75 years methods study sample this is a secondary analysis utilising data from the aspirin in reducing events in the elderly study and the aspree longitudinal study of older persons questionnaire substudy ethics approval was received from the monash university human research ethics committee and all participants provided written informed consent during 20102014 19114 communitydwelling healthy older adults with no overt disease likely to cause death in the next five years were recruited 23 all participants provided written informed consent at recruitment exclusion criteria included prior cvd events presence of function limiting physical disability or major cognitive impairment 23 followup was completed on 12 june 2017 lowdose aspirin was found to have no significant effect on the primary endpoint of disability free survival nor cardiovascular disease events over a median followup of 47 years 2425 in aspree 155 of participants were lost to followup and 124 withdrew consent during this time 24 eightynine percent of australian aspree participants also participated in alsop and most within 15 months of enrolling in aspree 26 most completed both the alsop medical and social questionnaires participants were excluded from this analysis if they had incomplete social health data or reported living in residential care facilities or nursing homes at the time of the first alsop questionnaire completion excluded participants were more likely to be older women have more education and have better highdensity lipoprotein cholesterol table 1 however there were no differences between excluded and included participants in terms of social health ethnicity residential region smoking the number of cvd risk factors systolic blood pressure nonhdl diabetes serum creatinine antihypertensive drug use cvd incidence or cvd mortality social health as we were interested in assessing whether social health could be incorporated into cvd risk models the social health questions needed to be readily interpretable there are no established or validated cutoffs for social health measures however the majority of studies in valtorta et al 4 s relevant systematic review have created continuous scores based on several questions with some comparing the highest versus lowest categories this approach has helped determine a link between poor social health and cvd despite the exact social health measures differing in the various studies however this approach limits translation to public health messaging as the actual level of social isolation social support or loneliness is difficult to determine and there is not a universally agreed method for assessment of social health for example it is difficult to determine what the lowest or highest categories represent in terms of number of close friends social contacts and community activities clear public health messages akin to having a systolic blood pressure less than 120 mm hg would be of benefit for research translation furthermore we hypothesise that there is likely a threshold of optimal social health for cvd benefit and that the relationship is not linear hence we have assessed social health as dichotomous categories that supports application to broader settings in our study social isolation was defined as engaging in community activities less than once per month and having contact with four or fewer relatives and close friends in a month social support was defined as having four or more relatives or close friends with whom private matters could be discussed or be called upon for help from the validated revised lubben social network scale 27 collected through alsop we utilised two questions that pertained to social isolation how many of your friends relatives do you see or hear from at least once a month with six response options and how often do you a go to a club local organisation neighbourhood or other small group b attend an educational class c go to a church temple or other place of worship or take part in related activities with five response options and four questions that pertained to social support how many friendsrelatives do you feel at ease with that you can talk about private matters and how many friendsrelatives do you feel close to such that you could call on them for help with six response options loneliness was defined by feeling lonely occasionally or all of the time based on an item from the center for epidemiological studies depression scale during the past week i felt lonely which was collected as part of aspree for sensitivity analyses two approaches were employed to calculate social health measures as continuous first each response category was sequentially numbered second the response categories were recoded as values for example threefour became 35 in the second scenario nine or more was recoded as 9 sometimes as 2 often as 8 and always as 24 social isolation scales ranged from 021 and 085 social support from 020 and 036 and loneliness from 03 and 06 the social health composite categories were defined using the binary categories of social health as positive or poor cardiovascular disease the main outcomes were incident cvd and fatal cvd and subtypes are major adverse cardiovascular events heart failure hospitalization mi and stroke incident cvd was a prespecified secondary endpoint of aspree adjudicated by an expert committee 24 participants were followed until either the datacut date or when they had a cvd incident or censored at the point where contact was lost full details have been provided previously 24 incident cvd included fatal or nonfatal myocardial infarction heart failure hospitalization and fatal or nonfatal stroke mace included incident cvd but excluded heart failure and haemorrhage stroke nonfatal mi was defined according to the joint guidelines of the european society of cardiology and the american college of cardiology 24 heart failure hospitalization was defined as any unplanned overnight stay or longer in a hospital or similar facility with heart failure as the principal reason for admission the criteria for the diagnosis of nonfatal stroke were identified by the world health organization 24 potential confounders as we were interested in assessing whether social health is a cvd risk factor beyond established cvd risk factors we considered potential confounders to be those already incorporated in a primary cvd risk assessment tool developed specifically from this cohort 28 as sensitivity analyses additional models adjusting for sociodemographic lifestyle and depressive symptoms covariates outlined by the heart foundation of australia 29 were examined stratification current cvd risk assessment tools 3031 could be improved through incorporation of newly identified cvd riskfactors as social health may be one such cvd riskfactor stratification was undertaken to assess interaction effects the analysis assessing composite social health as a predictor of cvd incidence was stratified by sociodemographics and cvd risk factors sample size and statistical power based upon a type i error of 0050 power of 80 an exposure rate of 8 and a hazard ratio of 130 4 74 cardiovascular events would be needed to examine the main aim of whether social health predicts cvd among the 11486 included participants there were 487 nonfatal and 83 fatal cvd events over the median 47 years of followup statistical analysis the correlation between social isolation social support and loneliness was assessed and then the associations with cvd using cox proportional hazards regression competing events for fatal cvd were also assessed the main analysis was adjusted for covariates in a cvd risk assessment tool developed specifically from this cohort 28 and sensitivity analyses were undertaken with further adjust for sociodemographic lifestyle and depressive symptoms covariates to test robustness of the main aim participants censored or with cvd in the first halfyear and then year were excluded to account for potential for reverse causality and the delay between aspree baseline and alsop questionnaire completion finally sensitivity analyses assessed social health as continuous measures analyses were performed using stata version 151 a pvalue of 005 was be used to determine statistical significance results the final subcohort consisted of 11486 communitydwelling older australians table 1 the majority of participants had positive composite social health at baseline with only a few reporting isolation low support or loneliness there was some crossover as participants who were classified as being socially isolated were also much more likely to report low social support than participants not socially isolated similarly participants who were socially isolated or had low social support were more likely to report being lonely while 8 were categorised as having poor social health only 005 were categorized as being poor on all three prior work has demonstrated that social isolation social support and loneliness displayed diverse relationships with cvd risk factors and risk scores in this cohort 34 physical inactivity and experiencing depressive symptoms were the only consistent cvd risk factors associated with all three social health domains 34 this prior work emphases the importance of distinguishing between these three domains there were 487 first time cvd events during the 50887 personyears of observation 348553 range 07 first time cvd events occurred on average at age 801 ± 56 sd years there were 83 cvd deaths during the 52353 personyears of observation cvd deaths occurred on average at age 829 ± 63sd years social health as a risk factor for cardiovascular disease poor social health as a composite measure predicted both incident cvd and fatal cvd individually social isolation and low social support predicted incident cvd events there were too few fatal cvd events among participants who were isolated or had low support to assess the relationship however we were able to assess loneliness which predicted fatal cvd after adjusting for traditional risk factors these relationships remained with a slightly lower magnitude of association in sensitivity analyses further adjusting for sociodemographic lifestyle and depressive symptoms cvd risk factors these relationships remained with again a lower magnitude of association and a few lost statistical significance when inclusion was restricted to participants still enrolled and without events after sixmonths or oneyear from aspree baseline the magnitude of associations became stronger social health as a risk factor for cardiovascular disease subtypes social isolation low support loneliness and poor composite social health consistently predicted ischemic stroke events in sensitivity analyses adjusting for sociodemographic and lifestyle cvd risk factors the associations between poor social health and stroke held except for loneliness which was attenuated and lost statistical significance when adjusted for depressive symptoms no other distinguishable pattern among cvd subtypes emerged social isolation predicted heart failure hospitalization while low social support and loneliness predicted mace subgroup analysis of social health as a predictor of cardiovascular disease age smoking and residential region modified the association between social health and cvd risk fig 2 poor social health increased the risk of cvd almost 5fold among smokers and doubled the risk among participants aged 7075 years or participants living in a major city alternative assessment of social health measures when social health measures were assessed on continuous scales no strong patterns with cvd outcomes were observed discussion individuals with poor social health were 42 more likely to develop cvd and twice as likely to die from cvd over a five year period among communitydwelling older adults who were free of diagnosed cvd and dementia at baseline poor composite social health more strongly predicted incident cvd among participants who were currently smoking living in a major city or aged 70 to 75 years in regards to the individual components of social health there were too few fatal cvd events among participants who were isolated or had low support to assess the relationship however social isolation and low social support predicted incident cvd and loneliness predicted fatal cvd in regards to the cvd subtypes all measures of poor social health consistently predicted ischemic stroke additionally isolation predicted heart failure hospitalization while low support and loneliness predicted mace social health as a risk factor for cardiovascular disease the magnitude of association reported here between poor social health and incident cvd aligns with a systematic review of 23 studies from 16 datasets with 4628 chd and 3002 stroke events over 3 to 21 years 4 however that review did not investigate which components of social health were driving these associations we show that the risk of incident cvd increased by 66 if individuals were socially isolated and doubled if individuals had low social support however no association was observed with loneliness there have been very few prior studies which have investigated the association between loneliness and cvd incidence with three 35 36 37 38 39 reporting an association and one 36 reporting no association however there are a few discrepancies between these prior studies which make it difficult to compare our findings two 3537 observed the association among women one 37 was restricted to daytime loneliness as some end points were composites a participant who had events for more than one component of the composite would contribute only the first event that occurred to the composite end point but would contribute an event to the separate analyses of each component hence summation of the number of events for separate components of a composite end point does not equate to the number of events for the composite end point if there are fewer than five participants in a cell then statistics are not reported to preserve participants privacy and potential unreliable statistical inferences b cvd incidence a prespecified secondary end point was a composite of fatal chd nonfatal myocardial infarction fatal or nonfatal stroke or hospitalization for heart failure for women homemakers in two 363839 loneliness measures incorporated aspects of social isolation and or social support and the cvd measures varied between studies in detail among 353 american women homemakers from the framingham study feeling lonely during the day was associated with mi and coronary death over twenty years 37 among 2616 americans aged 2574 years from the national health and nutrition examination survey the same single loneliness question as used in our study was associated with chd incidence over 15 years among women but not men 35 among 5000 british aged 50 years from the english longitudinal study of ageing loneliness was associated with heart disease and stroke over 54 years 39 and cvd incidence over 96 years 38 among 479054 british aged 4069 years from the uk biobank study loneliness was not associated with acute mi and stroke incidence over 71 years 36 among these four cohorts two also assessed social isolation and reported no association with heart disease and stroke 39 mi and coronary death 37 or cvd incidence 38 notably we are the first to assess loneliness as a predictor of cvd incidence among adults aged 75 years therefore our findings may indicate that social isolation and social support are more important than loneliness for cardiovascular longevity in later life additionally we are the first to assess all three social health constructs separately and our findings highlight the importance of considering aspects of social health beyond perceived loneliness subgroup analysis of social health as a predictor of cardiovascular disease three subgroups had a greater risk of incident cvd from poor social health indicating interaction effects given the magnitudes of these interaction effects the combination of poor social health with smoking residential location andor age is particularly important as a possible inclusion in future cvd prediction tools first we identified that among individuals who smoke poor social health increased the risk of cvd almost 5fold compared to smokers with good social health smoking is a wellestablished modifiable risk factor for noncommunicable diseases including cvd and mental health disorders like depression the benefits of quitting have been communicated through decades of public health campaigns and tobacco control policies however this has created a negative smoking stigma especially among vulnerable groups who find it difficult to quit 40 smoking stigma incorporates aspects of shame social isolation and discrimination and may compound stigma experiences in other areas 40 additionally australian ethnicity not whitecaucasian as there were fewer than five participants in a cell the statistics are not reported to preserve participants privacy and potential unreliable statistical inferences the social health composite categories were defined as positive or poor age edu education seifa areabased index of relative socioeconomic disadvantage 55 anti hyp use antihypertensive drug use cvd risk number of the prior five cvd risk factors adjusted based on a primary cvd risk assessment tool developed specifically from this cohort 28 age gender smoking systolic blood pressure highdensity lipoprotein cholesterol nonhdl diabetes creatine and antihypertensive drug use tobacco control policies prohibit smoking inside public spaces and have contributed to the general decline in smoking rates 41 reducing the availability of peers with whom to share social smoking older adults would particularly have fewer opportunities for social smoking as the rate of daily smokers is particularly low 41 partly likely due to smoking being such a strong risk factor for lifelimiting disease and death second among individuals living in a major city poor social health doubled the risk of incident cvd international and national research has suggested that people who live in rural outer metropolitan fringe or lower socioeconomic locations are at greater risk of social isolation and loneliness 72042 however among older australians contradictory to these findings social isolation is more prevalent in both the largest urban city centres and in the most substantial and sparsely populated territories 4344 hence the interaction effect of living in a major city and poor social health with increased incident cvd may be specific to older adults potentially a greater sense of community in regional areas compared to australian cities may be the cushioning benefit 45 pretty and colleagues 45 suggest that beyond social support the sense of community provides a buffer against physical and psychological symptoms of illness and facilitates adjustment for example a sense of community may be particularly important for older adults with children who have moved away or family and friends who have passed away or moved into care third among individuals aged 7075 years poor social health doubled the risk of cvd the risk of poor social health becomes greater as we age due to the occurrence of life events including retirement financial strain downsizing poorer health disability cognitive decline loss of independence moving into care and bereavement 72021 social health as a risk factor for of cardiovascular disease subtypes the link between poor social health and stroke is consistent with the systematic review of 23 studies by valtorta et al 4 however our magnitude of association for composite social health as a predictor of stroke was higher than the previous overall estimate notably the previous systematic review predominantly assessed social isolation but included measures of low social support and loneliness our magnitude of association for social isolation as a predictor of ischemic stroke was even higher potentially the difference in the magnitude of association could be a reflection of the greater age of our cohort compared to those encompassed by systematic review we also add that each separate social health component was associated with incident stroke and low social support having the strongest effect other associations were less consistent across cvd subtypes and social health components specifically social isolation predicted heart failure hospitalization and low social support and loneliness predicted mace however these less consistent association could be driven at least in part but low power for some of the analyses strengths limitations when interpreting our finding it is important to note that our aim was to assess the contribution of social health as a predictor of incident cvd beyond current cvd risk prediction models hence analyses were adjusted for cvd risk factors in an established prediction model as these cvd risk factors are on the causal pathway between social health and cvd such adjustment likely leads to an underestimate of the importance of social health for cardiovascular health however our minimally adjusted models were fortunately only slightly stronger in magnitude when compared our main analysis adjusting for a cvd risk prediction tool furthermore our assessment of social health was based on potential questions that could be incorporated into cvd risk models our continuous assessment of social health illustrates that the association with cvd may not be linear and that there is likely a threshold for optimal social health furthermore prior social health assessment based on continuous scores would be difficult to incorporate into a cvd model given that our cohort were healthy and had good social health our continuous score findings are likely not comparable to prior studies the main limitation of this study is that our sample had an expectedly lower prevalence of poor social health compared with prior population estimates 6746 and coupled with the five year followup period there were not enough fatal cvd events to assess social isolation or social support as predictors furthermore the sensitivitiy analysis expanding loneliness to three categories reduced the number of poor social health cases in the reference category and likely reduced the power for statistical inference in such a relatively healthy cohort a longer followup period would be optimal furthermore assessment of social health over a longer period of time would provide the opportunity to assess the contribution of longitudinal changes in social isolation social support and loneliness including persistent poor social health however the healthy sample is also a strength as it reduces the likelihood of reverse causality where an incident cvd or preceeding symptoms could lead to reduced social health 22 furthermore each generation of older people have comparatively greater mental and physical capabilities and this older healthy cohort is likely representative of future generations 47 people may feel embarrassed or uncomfortable acknowledging that they are experiencing poor social health particularly given that there is a potential harmful stigma to being labelled as lonely by a health care provider 5 however underreporting of poor social health would result in our effect estimates being conservative inconsistency in social health measures is a common limitation of this research area 4849 and we acknowledge that dichotomisation undertaken to compare to prior findings and assess social health as a composite may not be optimal however a singleitem measure of loneliness is commonly used has been acknowledged as valid and is likely more appropriate for an older age group 50 loneliness was part of the depressive symptoms scale however there was no difference if adjustment included or excluded the loneliness item in the depressive symptoms score heart failure hospitalization may have been influenced by poor social health 8 which may have contributed to the stronger association with social isolation as participants were relatively healthy mainly white and communitydwelling generalizability may be restricted due to culture healthcare systems and socioeconomic standing 51 additional common limitations of cohort studies include the healthy cohort effect and the fact that participation may influence the variable of interest strengths of this study include analysis of a large wellcharacterized populationbased cohort of older adults with a very high response rate to our survey instrument data had high integrity very little loss to followup validated and adjudicated measurement of the outcome and low misclassification bias due to continuing review of medical records even in the event of attrition we are the first to identify an association between social health and cvd in an australian sample 52 which is likely due to our validated medically diagnosed measure of cvd it is known that socially isolated older adults are hard to recruit for research 53 and individuals with poor social health have more general practitioner visits 485455 hence a strength of this study is that recruitment was through general practice findings are generalizable to communitydwelling people who reach age 70 without overt cvd dementia or other known lifelimiting disease clinical implication the aging population presents the challenge of supporting older people to maintain a healthy fulfilling independent and communitydwelling life for longer traditional cvd risk assessment tools 3031 concentrate on physical health the incorporation of newly identified cvd risk factors need to be explored to improve cvd risk prediction in sensitivity analyses we demonstrate that poor social health predicted fatal cvd and the relationship with incident cvd was only slightly attenuated with extensive adjustment for traditional sociodemographic lifestyle and depressive symptoms cvd risk factors further poor social health consistently predicted ischemic stroke regardless of adjusted covariates our findings that poor social health predicts incident cvd fatal cvd and stroke and the strong interaction effect with smoking present a solid foundation to incorporate social health in future cvd risk prediction models in the interim health professionals are part of a multidisciplinary network and could identify patients who have poor social health for community supports even if health professionals cannot change their patients social circumstances they could concentrate more on these highrisk individuals cvd risk factors such as smoking blood pressure and cholesterol conclusions we observed that healthy communitydwelling older adults with poor social health were 42 more likely to develop cvd and twice as likely to die from cvd over five years internationally 610 of older adults have poor social health 720 and given the rapid growth in the number of older adults the number of people affected will be substantial over the next decades here we present the first assessment of social isolation social support and loneliness separately as predictors of incident cvd events our findings demonstrate that among healthy older adults social isolation and low social support may be more important than perceived loneliness for cardiovascular health in later life our findings highlight that poor social health predicts incident cvd events beyond biological cvd risk factors and thus should be considered in future risk prediction models until social health is formally introduced into cvd prediction models health professionals could utilise this information to identify individuals at high risk and intervene on their other cvd risk factors further our findings inform future intervention work and policy shaping how a better understanding of social isolation social support and loneliness can be built into our current cvd prevention and management practices to enhance their effectiveness additional file 1 authors contributions rfp takes responsibility for the analysis design the integrity of the data the accuracy of the data analysis and the critical interpretation of the data rfp jr jn ao contributed to data analysis decisions rfp jr jn at cr ao contributed to early revisions all authors including rw mn ns mb jm and cb contributed to the final version of the paper and have read as well as approved the final manuscript funding consent for publication na competing interests none declared the data collection analysis and interpretation of data the writing of the manuscript and the decision to submit the manuscript for publication were solely at the discretion of the researchers independent of the funders • fast convenient online submission • thorough peer review by experienced researchers in your field • rapid publication on acceptance • support for research data including large and complex data types • gold open access which fosters wider collaboration and increased citations maximum visibility for your research over 100m website views per year

background poor social health is associated with increased risk of cardiovascular disease cvd recent research suggests that different social health domains should be considered separately as the implications for health and possible interventions may differto assess social isolation low social support and loneliness as predictors of cvd methods secondary analysis of 11486 communitydwelling australians aged 70 years and over free of cvd dementia or significant physical disability from the aspirin in reducing events in the elderly aspree trial social isolation social support revised lubben social network scale and loneliness were assessed as predictors of cvd using cox proportionalhazard regression cvd events included fatal cvd heart failure hospitalization myocardial infarction and stroke analyses were adjusted for established cvd risk factors results individuals with poor social health were 42 more likely to develop cvd p 001 and twice as likely to die from cvd p 002 over a median 45 years followup interaction effects indicated that poorer social health more strongly predicted cvd in smokers hr 483 p 0001 pinteraction 001 major city dwellers hr 194 p 0001 pinteraction003 and younger older adults 7075 years hr 212 p 0001 pinteraction 001 social isolation hr 166 p 004 and low social support hr 205 p 0002 but not loneliness hr 14 p 01 predicted incident cvd all measures of poor social health predicted ischemic stroke hr 173 to 316 conclusions among healthy older adults social isolation and low social support may be more important than loneliness as cardiovascular risk factors social health domains should be considered in future cvd risk prediction models

introduction the healthy immigrant effect describes an initial advantage of immigrant health status which is lost over time as the length of residence increases in the settlement society 1 a growing body of medical and social science evidence has shown that immigrants are indistinguishable from or superior to nonimmigrants on measures of health and wellbeing 1 2 3 4 5 6 although more attention has been paid to examine this phenomenon with adult immigrant populations studies investigating the healthy immigrant effect with children and adolescents of immigrant families still remain scarce 17 by comparing foreignborn immigrant adolescents and their nativeborn peers the present study elucidates two research questions concerning the wellbeing of adolescents the first is whether adolescents selfreports of health and adaptation will yield comparable outcomes to adult populations in demonstrating immigrants health being better than the health of their nativeborn counterparts 15 the second is to what extent the healthy immigrant effect can be differentiated in terms of gender and age for adolescents 8 9 10 11 the present study acknowledging the interlink of mental health and physical symptoms 12 focuses on adolescents wellbeing to ascertain the healthy immigrant effect by examining physical mental and psychological domains of health and daily stress life satisfaction and sense of belonging for adaptation domains it is possible that immigrant experience may not be adverse to their health and adaptation and in turn to challenge the tradition of conceiving immigrants as suffering from ill health and maladaptation which is reported in the literature as the immigrant paradox 13 14 15 16 or epidemiological paradox 1718 the health of immigrant adolescents needs to be understood with the influence of social determinants such as their socioeconomic status 19 and resilience 20 21 22 even though immigrant adolescents have disadvantaged and less affluent surroundings in general 13 in canada their mental health advantages over their canadian nativeborn counterparts were affected less by family dysfunction or negative family factors 23 so while family affluence has shown positive influences as a material condition affecting individuals health behaviors and parental support as opposed to poverty linking to negative consequences 1324 family affluence itself may not affect and explain the health conditions of immigrant children and adolescents instead declines in immigrants initial advantages in health have been explained by changes in the immigrant family lifestyle these changes increase with length of residence in the settlement society as immigrants are exposed to and engage with the new cultural and socialization standards adolescent health and adaptation people in good health display more than an absence of negative physical symptoms they also display positive adaptation a sense of control of their social surroundings life satisfaction and engagement with others 25 one of the most robust predictors of adolescents health is their perception of the level of stress they experience in terms of chronic strain and daily hassles 26 accordingly to be healthy adolescents need to improve the conditions of their daily life and to build a sense of cohesion in the community 7 therefore it is essential and appropriate to examine the health and adaptation of adolescents together when considering the issues of their overall wellbeing in an evaluation of immigrant adolescents overall wellbeing it is important to trace their developmental social and familial aspects of adaptation using a framework that compares them with their nationalgroup peers in the settlement society 27 compared to their native counterparts immigrant adolescents generally experience more daily hassles and stress related to parents and school 28 although their familial surroundings can be a source of stress they can also be a protective beneficial ground for good adaptation because adolescents coping and adaptation are supported by family relations and family relations in turn serve as a stressbuffer mechanism easing alienation and ensuring a sense of security 102930 so it is possible to find that the lives of immigrant youths with their experience as immigrants per se do not necessarily lead to adaptation problems 16 immigrant adaptation is the process through which individuals seek to satisfy their needs pursue their goals and manage demands encountered after relocating to a new society 31 consequently immigrants need to possess functional abilities to perform new and redefined roles in the settlement society at productive and satisfactory levels 32 based on such two aspects in their experiences managing their present conditions and preparing for their future adolescent immigrants have more diverse contexts of support than adult immigrants as they seek to build social capital since immigrant adolescents as compared to adults are in a better position to access a range of resources through social relationships and education they may be also better able to develop skills for participation and to enhance their means of access into the new society with both institutional support and personal social networks immigrant adolescents have opportunities to develop their psychological stability and confidence the results of which are cumulative at multiple levels 3133 a research question is then whether the outcomes of immigrant adolescent health and adaptation would be comparable to those of immigrant adults for example immigrants somatization a mechanism by which an individual expresses psychological distress with physical symptoms has been explained as related to their social isolation in times of stress 34 however the prevalence of psychosomatic symptoms between immigrant and nonimmigrant adult populations has been reported as very similar in clinical samples 35 with no differences found by gender and age 36 or by ethnocultural background 37 overall for adult immigrants level of stress sense of belonging and degree of life satisfaction are important measures of adaptation all of which have been associated with their somatization 38 in the present study three specific points are considered with regard to how adolescents selfperception of health and adaptation needs to be studied for the healthy immigrant effect firstly a large nationally representative data set are needed across all regions of a nation to avoid the possibility of yielding outcomes affected by the small sample size or by the data collection from the areas where immigrant populations are concentrated 1012 secondly research yields that adolescent selfreporting is considered to be accurate and reliable while the validity and reliability of the instruments currently available to measure adolescents wellness are inadequate 42 thirdly in general research shows that adolescents selfreported health varies with social determinants such as socioeconomic status material deprivation and parenting influenced by poverty 810 43 44 45 therefore a comparative study of health with immigrant and nonimmigrant adolescents should control for such social determinants effects of gender and age during adolescence the differences exhibited by adolescent girls and boys in health and adaptation have been reported as salient girls are more susceptible and vulnerable 846 similar to the adult populations 47 such generalisability is supported by the ethnic equivalence theory which posits certain degrees of similarities across ethnic groups 4849 on the other hand the common vulnerability theory and the coping deficit theory have been questioned for explaining gender differences by suggesting girls higher vulnerability and susceptibility to their social context and their lack of coping skills which in turn leads to experiencing more symptoms 50 the primary source of the social context affecting adolescent mental health is the home environment 1251 at home immigrant girls may live in less favorable familial contexts such as being involved in stressprovoking situations arising from their parents gender differential parenting practices 19 as such they may exhibit more psychosomatic symptoms than boys 14 immigrant boys on the other hand are more vulnerable in the restricted urban socialization context 52 and tend to externalize their problems in engaging in risky behaviors and delinquency 19 although adolescents selfperception of health and adaptation vary with their age as well as gender effects of age have been studied much less than those of gender 11 since the two most frequently experienced symptoms of psychological illness by adolescents are of anxiety and mood disorders with considerable gender and age differences 1251 53 54 55 this study also investigates to what extent immigrant adolescents are thought to be different in their selfreporting of these symptoms compared to their nonimmigrant peers so far studies have shown that significantly more girls experience the symptoms of the anxiety and mood disorders although no difference has been found in the average age of the onset between gender 12 or by ses 55 or by ethnicity 56 but it is an early stage of research on psychological illnesses in terms of immigrant status 57 studies with large sample sizes suggest that there is still a need to clarify how the interplay of gender age and immigrant status is to be found with adolescents for their perception of wellbeing during early adolescence boys have shown better overall mental health 9 while reports of subjective health complaints among young adolescents increased with age more so for girls than boys 46 when compared by immigrant status young immigrant adolescents in italy reported more psychosomatic symptoms and lower life satisfaction than their native classmates but the differences between immigrant and nonimmigrant groups were not explained by ses or lack of social integration 58 however with a large data set of grades 7 to 12 students in the us harker 10 revealed that the firstgeneration immigrant adolescents experienced more positive wellbeing than their nativeborn counterparts of similar demographic and family backgrounds which was sustained by protective factors from family and community such as parental supervision and lack of parentchild conflict therefore it is critical to investigate how particular age groups of adolescents in a particular society would show different degrees influenced by various factors contributing to their wellbeing 59 in sum the present study seeks to examine the healthy immigrant effect in the canadian adolescent population the first objective is to investigate whether immigrant adolescents reports are better than their nonimmigrant peers if so to what extent the healthy immigrant effect is evident in the domains of health and in the domain of adaptation the second objective is to clarify the influences of gender and age in conjunction with the healthy immigrant effect immigrant adolescents are predicted to show resilience by exhibiting better health and robust adaptation girls may show vulnerability in their experiences however it is still possible to find no gender difference if they show good social adaptability regardless of their less favorable selfreporting of health or of immigrant status in terms of age this study hypothesizes that older adolescents will experience more health and adaptation problems but it is not certain what changes or patterns would be shown in terms of the interactions with gender and immigrant status the third objective is to detect differential influence by length of residence on immigrant adolescents perceptions of health and adaptation in order to shed some light on the general trajectory of the healthy immigrant effect methods data source the data analysed for this study are from the canadian community health survey which was collected from january to december 2007 throughout all regions of canada 60 the authors of the present study were not involved in questionnaire design or data collection consequently obtaining consent from the participants and ethical approval were not the authors responsibilities for the purposes of the present study participants aged 1219 who were either foreignborn immigrant adolescents or canadian nativeborn nonimmigrant adolescents were selected among the immigrant adolescents 625 had less than ten years of residence in canada and 295 had ten years or more cchs sampling included randomly selected households from the lists of regional health units and from the lists of household telephone numbers with a target number proportional to the general population size of each region approximately half of the participants were interviewed in person the other half were interviewed over the telephone participation in the survey was voluntary and the overall national response rate was 78 ranging from 75 to 86 by region the respondents had the option of using english or french or using one of 22 ethnic languages the participants report on their cultural and racial backgrounds was used to derive their visible minority status in this study and coded as 0 white and 1 nonwhite the demographic measures included for this study from the data source and their differences between the two immigrantstatus groups are shown in table 1 the mean age of the immigrant adolescents was slightly older slightly more boys than girls participated in both immigrant and nonimmigrant groups greater proportions of immigrant adolescents were visible minority members than nonimmigrants immigrant adolescents also reported higher numbers of family members living together in the household but lower levels of household income than did their nonimmigrant peers on the other hand the participation ratios of adolescents with a parent were very similar 7678 between immigrant and nonimmigrant groups as well as between boys and girls the statistical analyses were carried out with statistica 51 measures the four measures of health and three measures of adaptation were adopted from the cchs the question formats and response scales were for example the single item for general health asked in general would you say your health is… with a response option ranging from 1 excellent to 5 poor and the item for daily life stress asked about the amount of stress in your life would you say that most days are … with a response option ranging from 1 not at all stressful to 5 extremely stressful participants were also asked whether or not they had had specific illnesses lasting six months in duration or longer the two categories of illness were chronic illnesses with psychosomatic symptoms and household income 1 0 19999 2 20000 39999 3 40000 59999 4 60000 79999 5 80000 or more with each condition coded as 0 no and 1 yes the illness categories were computed by summing the binary coding consequently chronic illnesses with psychosomatic symptoms ranged from 0 to 5 and psychological illnesses ranged from 0 to 2 results the first sets of analyses were carried out with the immigrant adolescents comparing those with less than ten years of residence to those with ten years or more no significant differences were found for either health or adaptation measures with or without the set of control variables as covariates consequently further analyses were done with all immigrant adolescents together as one group when they were compared to the nonimmigrant adolescents the adolescents examined in this study were in good health and welladapted according to their own selfreports table 2 shows means standard deviations and computational ns for the four measures of health and three measures of adaptation with lower scores indicating healthier and better outcomes the means for immigrant and nonimmigrant adolescents were both below the scale midpoint for all four measures of health as well as two of the three adaptation measure showing selfperceptions of being healthy and of being welladapted for the one exception sense of belonging the mean scores were slightly above the scale midpoint suggesting that both groups of adolescents had a mildly weak sense of belonging to their community nevertheless of the positive outcomes of health and adaptation for both immigrant and nonimmigrant adolescents the ftests using statistical significance levels of p 05 shown in table 2 revealed that the immigrant adolescents selfreports were still healthier than their nonimmigrant peers on all four health measuresgeneral health mental health chronic illnesses with psychosomatic symptoms and psychological illness after controlling the covariate effects of age visible minority status household income household size and presence of a parent during the interview only chronic illness with psychosomatic symptoms showed a gender difference since girls reported experiencing more symptoms regardless of their immigrant status for adaptation the adolescents were indistinguishable by immigrant status for all three measures of them daily life stress life satisfaction as well as sense of belonging regardless of their immigrant status all adolescents in this study perceived themselves as not being much stressed and fairly satisfied with their lives although having a mildly weak sense of belonging to their community this similar outcome between the two groups of adolescents suggests that the experience of the foreignborn immigrant adolescents had not adversely influenced them despite their less affluential family and household context in terms of gender girls regardless of their immigrant status reported more daily stress whereas boys reported a weaker sense of belonging but there was no gender difference in their life satisfaction one significant interaction indicated immigrant boys in particular feeling a weaker sense of belonging to the community in order to consolidate the measures reported in table 2 a health index and an adaptation index were computed table 3 presents the adolescents selfreports of their health and adaption by immigrant status gender and age group to compute the health and adaptation indices in table 3 two steps were involved first the measures were transformed from their responses on the cchs ranges to a 000 to 100 range for example a score of 2 on the general health item became 025 representing a response of onefourth of the 15 range second the four transformed health measures were averaged to compute the health index and the three adaptation measures were averaged to compute the adaptation index ancova analysis was carried out controlling for visible minority status household income household size and parent presence during the interview as covariates for the health index age gender and immigrant status all revealed significant effects without any interactions for the adaptation index two significant interactions were found age by gender and gender by immigrant status in addition to the age effect the adolescents were significantly different across the three age groupsyoung midaged the youngest group reporting the least problems of health or adaptation the significant interactions of adaptation age by gender and gender by immigrant status suggest that although the older teens perceived themselves as less welladapted the magnitude of such increases with age was greater with girls and this gender gap was greater in the nonimmigrant groups overall findings can be summarized as immigrant adolescents were healthier without showing adaptation problems as compared to their nativeborn nonimmigrant counterparts girls from both immigrant and nonimmigrant groups reported experiencing more stress and chronic psychosomatic illnesses however their reports on psychological illness and life satisfaction were not different from those of boys adolescent boys regardless of their immigrant status felt a weaker sense of belonging to community especially early teen immigrant boys in general older adolescents reported more problems with health as well as with adaptation but the two potentially vulnerable cohorts were older nonimmigrant girls and younger immigrant boys both of whom reported feeling less well adapted and immigrant adolescents did not report their wellbeing differently with their length of residence discussion to understand the overall wellbeing of adolescents the present study pursued two lines of inquiry the first was to posit whether foreignborn immigrant adolescents perceptions of their health and adaptation were better than their nonimmigrant peers thus providing evidence to support the healthy immigrant effect in relation to length of residence the second was to clarify the influences of gender and age in line with the healthy immigrant effect the findings of this study showed that foreignborn immigrant adolescents had not only better health conditions but also equally good adaptation when compared to their nativeborn nonimmigrant counterparts in the canadian general population however among the immigrant adolescents themselves their selfreports of health and adaptation did not differ with length of residence thus in this study the trajectory of immigrant adolescents wellbeing does not clearly accord with the fuller description of the healthy immigrant effect observed for adultsnamely that among immigrant adults earlier advantages of health diminish as length of residence increases with regards to the influence of gender the hypothesis predicting girls less effective adaptability was not supported in this study although the girls regardless of immigrant status reported experiencing more chronic psychosomatic symptoms and daily life stress they also showed equally healthy selfreporting on the other measures of health and adaptation as compared to boys hence this set of findings provides some evidence not in accordance with the theoretical explanations that girls are more vulnerable and utilize less effective coping strategies to lessen or ease their stress and internalization of difficulties as suggested by the common vulnerability theory and coping deficit theory for example 84648 notes i immigrants ni nonimmigrants or means significant differences ≈ means no differences controlling age visible minority status household income household size and presence of parent during the interview as covariates moreover immigrant girls are to be credited for their healthier acculturation a more robust social adaptability even though no measure was adopted to detect social adaptability in this study it seems that immigrant girls are developing new supportive relationships more easily in their social surroundings and receive benefits from them for their adaptation 61 in spite of differential parenting practices by immigrant parents making them experience higher stress at home 19 their less affluent family environments also do not deter their adaptation so the social adaptability generated by the immigrant girls can be interpreted as their resilience entailing the use of internal protective factors in combination with external protective factors 212252 considering age and gender together older girls and nonimmigrant adolescents perceived their health conditions less favorably the two vulnerable cohorts who were less well adapted were late teen nonimmigrant girls and early teen immigrant boys the former reported experiencing higher daily stress and the latter reported having a weaker sense of belonging for ongoing and future formation of policy these findings suggest that prevention and intervention strategies need to be age and gender appropriate to assist adolescents wellbeing as the transition of health in immigrant acculturation process is the result of interactions between an individual process and a supraindividual process 38 and consequential health outcomes are the result of interactions between individual compositional factors and societal contextual factors 1 it is critical to characterize the immigrants experiences in their acculturation setting within a national society 62 canada is a country with one of the strongest multiculturalism policies as specified in the canadian constitution act 1982 and charter of rights and freedoms the multicultural heritage and ethnic diversity of canadians as well as minority rights are officially recognized and guaranteed such official policies and societal environments might promote immigrants positive perception of own wellbeing with feeling welcomed and accepted as newcomers to canada considering that most immigrants to canada are from collectivistic cultures the ethnocultural background of immigrant adolescents can impact substantially on interactions with different sets of sociocultural rules which apply less restrictive boundaries for individuals 2930 as their length of residence prolongs they will undergo gradual changes in acceptance of new social rules and in selfperceptions of own wellbeing by utilizing different reference groups to shift from those of the country of original to those of the new settlement society identification of such reference groups for specific contexts was not possible with the data source for this study information about the country of origin and exact length of residence were also not available the measurement of length health index young teens m 12 m 12 m 14 m adaptation index young teens m 17 m 20 m 17 m 17 of residence by only two categories did not adequately detect developmental changes taking place among immigrant adolescents it can be argued that the immigrant adolescents examined in this study displayed positive outcomes due to the recency effect following their migration after all their length of residence was still relatively short moreover their acculturation process had been supported by school systems and peer relationships in the learning environments consequently they may have felt protected and optimistic about the social surroundings around them that is as the result of both institutional supports and personal social networks provided they had opportunities to build psychological stability and confidence which is the cumulative consequence over time 3331 more studies are needed to examine the extent to which immigrant adolescents support network in their immediate social surroundings such as friendship and mentor relations benefit and facilitate their health and adaptation in future research these kinds of multiplelevel effects can be further analyzed by structural equation modelling to specify mediating and moderating factors for adolescent wellbeing some discussions may be also warranted to explain the differences found between the two immigrant populations adult population samples in canada 5 and the adolescent population in this study since immigrant adults are not as welladapted even though both groups are better in their health conditions than their respective counterparts of nonimmigrants in explaining the difference between the two cohorts it would be appropriate to address to what extent social capitals and resources are available and accessible to them for their adaptation processes according to resourcebased theoretical approaches adolescent immigrants were supported by structural resources through institutionalized schooling which allow them to have access towards the new society while maintaining personal cultural resources through family and home contexts in turn their growing cultural knowledge and norms of the new society enable them to build efficient functional social networks without losing support from their own culture as the adaptation for immigrants is to possess adequate abilities for the present surroundings as well as for the future gains seeking personal satisfaction and pursuing goals to achieve mobility in the various contexts of the new settlement 3231 immigrant adolescents in the process of crosscultural acculturation seem to be better equipped than adult immigrants who are unfamiliar or less confident with such resources further the adaptation of adult immigrants depends on their own ability to regain lost resources by migration and to build new ones which would benefit them in the new country 31 in their attempts to build or join new social networks adult immigrants are bounded by the social boundaries formed by ethnicity and culture of origin both of which demand solidarity and groupmembership 63 their primary source of resources comes from their own ethnocultural communities already established in the settlement society because they provide a sense of embeddedness 63 and ethnic consciousness for them 32 however their own ethnocultural communities can also be a source of conflicts for individual immigrants who need to incorporate with and penetrate the new society by constraining their individual freedom 63 or by increasing social marginalization 32 with respect to the limitations of this study the present findings in support of the healthy immigrant effect do not exclude difficulties immigrants face in their settlement process the current results do not predict the trajectory of immigrant health 1 or the effect of national origin 18 or the effect of the migrant community size 62 or the influence by the specific immigrant status 57 attention also needs to be paid to the bases of the immigrant adolescent selfreports on their own health immigrant adolescents could have been influenced by their different expectations compared to their nonimmigrant counterparts 64 their reports may vary across ethnocultural groups in assessment of health conditions and health behaviors 65 and by willingness to report psychological and mental illness in particular 26667 regarding the stressors related to daily stress level and somatization it is conceivable that immigrant and nonimmigrant adolescents have differential problems in their familial contexts 193061 so the stressful impacts and possible coping strategies available to adolescents would also have been different in conclusion the present study does provide evidence for healthy and welladapted immigrant adolescent population samples in canada according to their selfreport immigrant adolescents to canada were in better physical and psychological health and were experiencing good adaptation equal to their nativeborn peers despite coming from a less affluent family background this set of outcomes calls for further research which would promote and sustain the longterm good health of the immigrant population in addition to the study of the social determinants on health and adaptation in order to provide information with respect to the effectiveness of services available to various agegroups of immigrants the prevention strategies for sustainability of physical and mental health as well as the development of adequate immigration policies competing interests the authors declare that they have no competing interests authors contributions kk conceived the framework of the study participated in the data analyses and wrote the manuscript fr participated in the design of the study performed the statistical analyses and contributed to the revisions of the manuscript both authors read and approved the final manuscript

introduction a longstanding and widely held assumption is that immigrants suffer from ill health and adaptation problems yet recent studies show that immigrants report the same or better state of health compared to their nativeborn counterparts this phenomenon known as the healthy immigrant effect has been found in studies of specific health conditions of adults the present study focuses instead on adolescents and extends its examination of the healthy immigrant effect measuring both health and adaptation methods using data from population samples in the canadian community health survey 2007 foreignborn immigrant adolescents n 920 were compared to nonimmigrant adolescents n 13572 for their selfreport to questionnaire items for health general health mental health chronic illnesses with psychosomatic symptoms and psychological illnesses and adaptation daily life stress life satisfaction and sense of belonging adolescents gender age and length of residence were analyzed for the effects results immigrant adolescents were better than nonimmigrant peers on the four health measures and did not differ from nonimmigrants on the three adaptation measures despite having less household income and more family members in the household immigrant girls exhibited more resilient adaptability while young immigrant boys and older nonimmigrant girls displayed some potential vulnerability length of residence on the other hand did not contribute to differences for the health and adaptation of immigrant adolescentsthe healthy immigrant effect was confirmed in a community population sample of adolescents in canada foreignborn immigrant adolescents experience better health as well as good adaptation equal to their nativeborn peers these outcomes call for further research on sustaining good health and adaptation of the immigrant population in particular by providing agerelated effective services and prevention strategies

introduction alzheimers disease is the most common form of dementia worldwide it can be defined as a neurodegenerative disease characterized by slowly progressive loss of cognitive functions such as memory thinking skills and behavioral changes 1 there are two main types of alzheimers earlyonset alzheimers which affects those in their 40s to 50s and lateonset alzheimers which affects those over 65 years of age the saudi alzheimers disease association estimates that 130 thousand people suffer from alzheimers disease in saudi arabia the number of patients worldwide will double by 2050 2 alzheimers disease affects daily living activities such as feeding toileting and the simplest tasks it also affects patients families and causes an economic burden with estimated costs of us 1 trillion globally 3 according to studies by connell et al perceptions and beliefs about alzheimers disease are very important to incorporate the recent cultural changes due to the accelerated prevalence and excess disease burden experienced by people in developed countries 45 early detection of alzheimers disease ensures that affected individuals and their caregivers can make appropriate plans and decisions for their healthcare needs 6 yet previous studies assessing attitudes and behaviors toward alzheimers disease in europe showed that the general public lacks adequate information regarding the disease or the benefits of early diagnosis and treatment 7 that several protective factors such as mental activity regular physical exercise and a healthy diet are significantly associated with a decreased risk of alzheimers disease 8 9 10 11 12 13 nevertheless little information exists about how general public attitudes and knowledge about alzheimers disease affect their health behaviors regarding alzheimers disease prevention according to a previous study conducted in the aseer region saudi arabia respondents who are young females and have a relative with alzheimers disease have good knowledge of the disease 14 however to date no previous research has assessed the knowledge attitudes and perceptions surrounding alzheimers disease among the general public in the makkah region therefore this study aimed to assess public awareness knowledge and attitudes toward alzheimers disease we also assessed sociodemographic factors influencing public knowledge of alzheimers disease materials and methods study designs the study was conducted on a communitybased prospective basis targeting the general population of makkah between january 30 2023 and february 12 2023 we ensured participants privacy by avoiding asking for names approval was obtained beforehand from the biomedical ethics committee of umm alqura university study population and sampling methodology in this study the raosoft online sample size calculator was used to calculate a sample size of 385 based on a margin of error of 5 a confidence level of 95 and an estimated total population of 2115000 a total of 545 participants were included in the study and convenience sampling was used all adults over the age of 18 who agreed to participate in the questionnaire and successfully completed it were eligible to participate in the study the participants who could not meet the criteria for participation were excluded from the study a nonprobability snowball sampling technique was used as the sampling method in order to protect the privacy of the participants the questionnaires were filled out anonymously we kept all data confidential and used it only for research purposes data collection an online arabic questionnaire was designed using google forms respondents received electronic links via social media platforms accompanied by the survey objectives the target population and a request to participate voluntarily survey responses were collected anonymously no identifying information and no private information was collected from participants all responses were confidentially maintained the alzheimers disease knowledge scale was used in this study which was previously published and reviewed 15 a translation to arabic was done to assure insurers of an accurate response according to similar published work conducted in the aseer region saudi arabia the questionnaire was edited and validated with three neurology consultants 14 the questionnaire was divided into three sections the first section covered sociodemographic data such as age gender and qualification the second part focused on responders awareness of the disease multiple statements were given and the survey taker had the choice of agreeing in the third section to assess knowledge survey takers were questioned on risk factors assessment and diagnosis course of the disease caregiving treatment and symptoms the questionnaire is available in the appendices data analysis statistical package for social sciences version 21 was used to analyze the data all statistical methods were twotailed with an alpha level of 005 considering significance if the p value is less than or equal to 005 overall knowledge and awareness level regarding alzheimers disease was assessed by summing up discrete scores for different correct knowledge items if the participants score was less than 60 of the overall score they were considered poor in awareness participants with 60 or higher scores were considered to have a good awareness level for study variables a descriptive analysis was conducted using frequency distributions and percentages these variables included participants personal data public perception and attitude toward alzheimers disease knowledge and awareness items in addition the participants overall awareness level was graphed cross tabulation for showing the distribution of participants overall knowledge and awareness level by their personal data this is done using the pearson chisquare test for significance and an exact probability test if there were small frequency distributions results a total of 545 eligible participants completed the study questionnaire they ranged in age from 18 to more than 60 years with 531 aged 1860 exactly 316 participants were females 304 were single and 204 were married as for educational level 357 were university graduates 127 had a secondary education and 49 had a postgraduate degree a total of 321 of the respondents lived in small families 198 lived in large families and only 26 lived alone about 98 had a relative diagnosed with alzheimers disease table 1 the publics attitude toward alzheimers disease in makkah saudi arabia is detailed in table 2 exactly 637 of the study respondents think that with a change in daily plans the elderly may find it difficult to balance their finances and 606 agree that once an alzheimers patient encounters difficulty in performing daily tasks there is a need to resort to the judiciary to preserve the patients rights likewise 521 of the study respondents prefer not to inform the person once diagnosed with alzheimers disease and 415 think that memory disturbance and forgetting are normal for the elderly and do not require medical advice about 339 of the study participants agree that once they have symptoms of dementia and memory disturbances they resort to common types of falk medicine in addition 283 think it is better for diagnosed patients to avoid going to social events and life activities to avoid embarrassment only 121 feel embarrassed if a relative was diagnosed with alzheimers disease and 196 dismiss a diagnosis when a relative has alzheimers disease discussion this study aims to assess public awareness knowledge and attitude toward alzheimers disease in makkah saudi arabia we found that 875 of participants had poor knowledge and with the rise in the prevalence of dementia and alzheimers disease among the continuously aging population a focus is being placed on early detection and treatment difficulties diagnosing and managing mild cognitive impairment which is usually the first presentation of dementia are attributed to a triad of hesitant patients unprepared healthcare providers and environments of misconceptions and false beliefs 16 however alzheimers remains less known in the community than other chronic diseases among the elderly there is a lack of factual information regarding alzheimers and even professionals have misconceptions about its differences from normal aging 17 people with alzheimers may also experience social stigma that delays their early diagnosis optimal treatment and effective delivery of quality care 18 according to this study 98 of the respondents had a relative with alzheimers disease which is lower than a recent study which found 45 of the respondents had a relative diagnosed with alzheimers disease 19 it is important to investigate the educational level of participants particularly those who have a relative diagnosed with the disease this is because it was reported previously that higher knowledge of patients caregivers was associated with higher academic qualifications 20 regarding knowledge assessment a number of studies have been conducted on alzheimers knowledge despite widespread knowledge of alzheimers a systematic review found that most people do not understand the disease well they think it is just part of the aging process 21 a higher level of knowledge about alzheimers was found to be related to younger age residing in an urban area and having experience with alzheimers contact or care 22 according to the analysis the majority of 477 participants in this study had poor knowledge levels similarly the highest proportion of participants in a previous study reported a low knowledge score 18 low knowledge was associated with older age and lower education this is also compatible with another study where knowledge of alzheimers was modest and significantly associated with a family history of alzheimers and higher educational levels 23 this gives an insight into the importance of addressing educational levels when investigating variable groups of participants in this study 483 know that genes are partially responsible for alzheimers disease in contrast a previous study reported that around 46 of participants believe that the cause of alzheimers disease is a brain disease 24 in this study the number of people who are aware that people with alzheimers disease are more likely to suffer from depression is 611 while 27 oppose living in nursing homes according to a previous study more than half of the participants believed that nursing homes should not admit people with alzheimers disease 24 considering attitudes toward alzheimers disease patients only 121 of this study feel embarrassed when a relative is diagnosed with the disease to avoid embarrassing situations 283 of participants believe it is better for diagnosed patients to avoid social events and life activities this is supported by a previous study that revealed multiple emotional reactions to a person with alzheimers ranging from anxiety and aggressiveness to prosocial reactions and rejection 25 similarly a study by marcinkiewicz and reid found that a large proportion of the community perceived people with dementia as violent and aggressive 26 in contrast another study reported that participants believed that people with alzheimers disease should not be discriminated against 27 public interventions should address stigma and increase knowledge while understanding alzheimers sociocultural beliefs in a systematic review stigmatizing perceptions and attitudes were mostly associated with modest disease knowledge lack of contact experience male gender and younger age 28 however the relationship between knowledge and attitudes remains to be investigated in a previous study scientific knowledge of alzheimers was not significantly related to personal fear of alzheimers while social comfort was correlated negatively with it 29 developing a positive attitude and perception for patients with alzheimers disease does not necessarily require knowledge of alzheimers strengths of the study this study provides valuable evidence since there are a limited number of saudi studies in this field this study also included participants from a wide range of demographic and socioeconomic backgrounds making it easier for the ministry of health to focus on the targeted population to raise awareness about alzheimers disease furthermore this study paved the way as the base for further studies in this aspect limitations of the study limitations were present in the study it may have been a highly selective group of cases because it was done in a specific setting that the questionnaire was not culturally adopted therefore generalizing the findings to saudi arabias population may prove difficult statistical significance would also improve with a larger number of respondents conclusions the results of this study revealed that the majority of 477 respondents had a poor knowledge level of awareness and knowledge of alzheimers disease among the general population in makkah a significant association was reported between those with relatives diagnosed with alzheimers disease and good knowledge regarding the disease the general population should receive more attention since there is an increasing prevalence of alzheimers disease based on this studys findings and conclusions we recommend this topic be investigated serially and frequently to generate more evidence and data convoys medical missions and conferences be held to increase the medical communitys awareness of this topic media platforms and broadcasts are exploited in raising public awareness towards the significance and impact of alzheimers disease appendices alzheimers disease knowledge scale 15 demographic characteristics if one of your relatives was diagnosed with alzheimers disease do you prefer not to tell the person with illness age agree disagree in the case of the patient diagnosed with alzheimers do you think that it is best to avoid going to social events and life activities in order to avoid embarrassment to the patient agree disagree alzheimers disease may result from black magic or psychological distress or bad eye agree disagree in the case of the appearance of symptoms of dementia and memory disorder for a relative will you resort to the popular types of alternative medicine agree disagree in case of difficulty in performing everyday tasks in a patient with alzheimers do you see it necessary to resort to the judiciary to save the patients rights

background alzheimers disease is a neurodegenerative disease that slowly deteriorates cognitive function over time this condition disables the geriatric population worldwide knowing its symptoms and presentation could help the general population seek medical attention early objective this study aims to assess the level of awareness knowledge and attitude towards alzheimers disease among the general population in makkah city methods this crosssectional study employed an online questionnaire distributed randomly in makkah saudi arabia a sociodemographic and attitude panel is included under each section of the questionnaire as well as a knowledge panel based on the alzheimers disease knowledge scale adks the knowledge and awareness level regarding alzheimers disease was determined by adding up discrete scores for each correct knowledge item a participants awareness level was categorized as poor if their score was less than 60 participants whose scores were 60 or higher were considered to have a high level of awareness results a total of 545 participants were investigated 316 58 were females a range of ages was represented among the participants from 18 to over 60 of the study respondents 68 125 had an overall good awareness and knowledge of alzheimers disease and its management while 477 875 had a poor knowledge level among divorcedwidowed participants 162 had an overall good knowledge level of the disease compared to 83 of married respondents with recorded statistical significance p049 also 204 of those with relatives diagnosed with alzheimers disease had good knowledge of the disease versus 107 of others without p009 conclusion according to the results there is a lack of awareness and knowledge of alzheimers disease this study suggests increasing public awareness and knowledge of alzheimers disease through campaigns and public education so that the disease is detected earlier

introduction the world health organization and the united nations childrens fund recommend that children initiate breastfeeding within the first hour of birth this recommendation is based on evidence that shows that breastfeeding in the first hour after birth improves the chances of newborn survival and the successful establishment of breastfeeding 1 in fact neonates who begin breastfeeding between 2 and 23 hours after birth have a 33 per cent greater risk of dying and for those who start breastfeeding 24 hours or later after birth this risk is twofold higher 23 compared with those who begin breastfeeding within one hour of birth despite the importance of early initiation of breastfeeding biological social cultural biomedical and health care systems factors have been identified as barriers for its practice 4 5 6 among these factors excessive prepregnancy weight has been identified as a risk factor for breastfeeding initiation 7 8 9 10 11 these findings are highly relevant for brazil where 487 of women of reproductive age are overweight or obese 12 social support which is a key factor underlying social relationships can be broadly classified into four categories emotional instrumental informational and appraisal 13 in brazil the right to have continuous support during childbirth is supported by law and it is usually offered by womens partners mothers siblings or friends 14 social support coming from social networks 15 or health care providers 16 has been positively associated with breastfeeding hence we hypothesized that social support may protect mothers with excessive prepregnancy weight from having a delayed breastfeeding initiation the aim of this study was to explore the association between prepregnancy excessive weight and breastfeeding within the first hour after birth and to determine if social support modifies this association using data from the nationally representative birth in brazil study which among other things was designed to identify risk factors for breastfeeding failure among obese women therefore we expect that this study will contribute to fill in a major gap in the literature 17 methods the data for the present study were obtained from the birth in brazil study which is a national populationbased study of postpartum women and their newborns carried out from february 1 2011 to october 31 2012 it included 23894 women interviewed in 266 hospitals from all five regions of brazil 18 sampling and data collection the birth in brazil study had a probabilistic and complex threestage sampling design in the first stage all hospitals which had 500 or more births per year in 2007 were identified stratified by region municipality and type of hospital which were selected with probability proportional to size defined by number of live births at each hospital in each stratum at least five hospitals and 450 women were selected sample size was estimated based on the caesarean section rate in brazil in 2007 of 466 to detect a difference between hospitals of at least 14 an alpha of 5 and power of 95 in the second stage an inverse sampling method was used to determine the number of days needed to interview 90 puerperal women in each hospital to account for the difference of number of live births in weekends and work days this period had to be of at least seven days in each hospital to ensure the recruitment of representative samples in the final stage the women eligible on each day of the fieldwork were selected a total of 1356 of women in the original sample were replaced 15 due to early hospital discharge and 85 due to refusal to participate 18 all women who had given birth to a live newborn regardless of weight or gestational age or to a stillbirth with birth weight � 500 g andor gestational age � 22 weeks of pregnancy in one of the sampled hospitals during the data collection were invited to participate all women with miscarriages were excluded in total 23894 women were interviewed at 266 hospitals distributed across 191 municipalities covering all the 27 brazilian states postpartum women were interviewed facetoface within the first 24 hours after birth to collect information on breastfeeding practices socioeconomic demographic biomedical as well as prenatal delivery care and pregnancy outcome indicators hospital directors were also interviewed to collect information on the hospital characteristics such as hospital funding sources and babyfriendly hospital initiative accreditation status further details on the data collection and the sample design are reported elsewhere 1819 data analysis exclusion criteria for our analytical sample included the following conditions that may impede breastfeeding mothers who tested positive for hiv 20 mothers or babies who were too sick to initiate breastfeeding 21 neonatal death gestational age 34 weeks infant malformation 22 resulting in a final sample of 21086 maternalinfant dyads variables the main exposure the outcome and the following potential confounders were selected based on findings from previous studies 4 5 6 socioeconomic and demographic variables included maternal age educational level high school or more parity and geographical region health care system factors included maternal receipt of breastfeeding during prenatal care combination of hospital funding source and babyfriendly hospital status and type of delivery the independent or exposure variable prepregnancy bmi was coded into six mutually exclusive categories prepregnancy bmi was calculated using height and weight measurements collected either from prenatal care cards or from the interviews with the mothers heights were missing for 152 and weights for 40 of the mothers the combination of missing information in both variables led to a total of 172 missing cases in the calculated prepregnancy bmi for these cases we imputed bmi following the multivariate imputation by chained equations 23 approach with the mi module from the statistical software stata the bmi cutoff points used were based on those recommended by the world health organization 24 underweight normal weight overweight class i obesity class ii obesity and class iii obesity the outcome breastfeeding within the first hour after birth was based on maternal selfreport and categorized as a dichotomous variable research staff queried the mother within the first 24 hours after birth regarding breastfeeding in the delivery room and the time at which breastfeeding was initiated social support was defined as having a companion at the hospital during any or all moments and categorized in a dichotomous variable based on questions asked to the mother by research staff information regarding hospital funding was provided by the hospital directors public hospitals are financed exclusively with public funds private hospitals receive only private funds and mixed hospitals are private institutions which receive public funds for a percentage of the hospital admissions multivariable statistical analyses the statistical analyses were performed with statase software version 15 given the complex sampling design we used the svy module from stata to conduct univariate and multiple main effects and interaction regression analyses between the outcome and the main exposure adjusting for covariates covariates with a significance level less than 020 were selected for multiple logistic regression models the interaction between prepregnancy body mass index and social support at the hospital was also included in the model to test the original hypothesis that social support may protect mothers with excessive prepregnancy weight from a delay in breastfeeding initiation this interaction was found to be statistically significant hence we used the model with the interaction term to calculate the predicted probabilities of breastfeeding within the first hour for each bmi category 25 furthermore the final models were ran stratifying the sample by social support status category regression findings were expressed as adjusted odds ratios and their corresponding 95 confidence intervals because only 05 of women fell in the obese class iii category regression estimates were very unstable ie with very wide confidence intervals especially for the models representing the subsample of women without social support therefore this subgroup of women was excluded from the hypothesis testing multivariable statistical analyses details of ethics approval results the prevalence of early breastfeeding initiation was 581 more than half of the mothers had a bmi within the normal range 7 were underweight 210 were overweight 6 had class i 19 had class ii and 05 had class iii obesity approximately one fifth of the mothers were adolescents and more than half had elementary school education or less almost 65 obtained information about the importance of breastfeeding during prenatal visits approximately one fourth of the mothers had their babies at public babyfriendly hospitals the prevalence of antepartum cesarean section was 428 the descriptive characteristics varied between those who had and those who did not have inhospital social support among those with social support 556 had more than high school education compared to 361 of those without social support while one quarter of the mothers with social support had their babies in private nonbabyfriendly hospitals less than 3 of the mothers without social support had their babies in these hospitals furthermore more than half of the mothers who had social support had their babies through antepartum cesarean while more than three quarters of those who did not have social support had their babies through vaginal delivery early breastfeeding initiation was more common among adolescents mothers who completed elementary school multiparous women and those who lived in the north region rates of early breastfeeding initiation were also higher among women who obtained prenatal information about the importance of breastfeeding women who gave birth at babyfriendly hospitals regardless of their funding sources and those who delivered vaginally also had higher early breastfeeding initiation rates bivariate analysis also indicated that compared to mothers with normal bmi overweight and class i obese women were less likely to initiate breastfeeding early furthermore stratified analyses showed that obese women were less likely to initiate breastfeeding early only when social support was not available multivariate regression analyses indicated that class i and class ii obese women had lower odds of breastfeeding within the first hour when social support was not provided accordingly the predicted probability of breastfeeding within the first hour was lower for those without social support by contrast this association was not found for mothers with normal prepregnancy bmi thus these results suggest that social support can protect mothers who have excessive body weight against a delay in breastfeeding initiation discussion more than half of the newborns from this nationally representative study were breastfed within the first hour after birth as previously reported 4 however the prevalence of this outcome varied according to prepregnancy bmi class i and class ii obese mothers were less likely to initiate breastfeeding within the recommended time similar findings have been reported in other countries 9 10 11 and in a smallscale study in brazil 26 yet this is the first study to investigate the association between prepregnancy bmi and breastfeeding initiation and whether or not this relationship is modified by social support our adjusted findings suggest that social support may protect obese mothers against a delay in breastfeeding initiation the presence of a companion has previously been reported as positively associated with breastfeeding practices 16 in fact research conducted in nigeria found that social support during childbirth acted as a catalyst for early breastfeeding initiation the median time to initiate breastfeeding was shorter for mothers who had companions 1527 we hypothesize that it is possible that companions provide psychological and possibly physical support during labor delivery and the postpartum period existing literature has suggested multiple mechanisms through which obesity can lead to a delay in breastfeeding initiation including psychological ones it is possible that obese women may have lower selfesteem greater body image dissatisfaction and poorer mental health compared to nonobese women 7 indeed women with increased concerns about their body shape or weight are less likely to intend to breastfeed 7 hauff et al 28 showed that although obese women intended to breastfeed as much as nonobese women there were psychosocial risk factors that may have explained at least in part the lower prevalence of breastfeeding initiation and shorter breastfeeding duration among them indeed once statistical models were adjusted for these psychological factors bmi was no longer significantly associated with either of these breastfeeding outcomes the psychosocial risk factors included lower confidence that they would reach their breastfeeding goals reporting fewer close friends or relatives who had breastfed and lower social influence from others to breastfeed all of these factors have the potential to trigger or exacerbate stress which in turn has been associated with impaired lactogenesis 29 in our study social support may have helped reduce stress 30 among obese women and partly explained how it protected against the risk of not initiating breastfeeding early the physiological mechanism underlying the relationship between social support stress and breastfeeding may be linked to oxytocin a neuropeptide that has stressattenuating and anxiolytic effects and is also necessary for the milk ejection reflex suckling stimulates the posterior pituitary gland to release oxytocin which causes the contraction of the myoepithelial cells surrounding the alveoli forcing milk from the alveoli into the milk ducts 31 in obese women the effect of oxytocin may be lessened by higher levels of leptin which is a hormone secreted by adipose tissue and has been shown to inhibit oxytocin activity on human muscle cells in vitro 32 the beneficial effects of social interaction on stress reduction seem to be associated with oxytocin as it has been shown that receiving positive social interactions triggers a release of this neuropeptide for instance positive communication and physical contact between married couples are associated with higher plasma oxytocin levels 33 which can dampen physiological stress levels it is possible that higher plasma oxytocin levels are associated with low norepinephrine levels blood pressure and heart rate 34 therefore social support may protect overweight and obese mothers against a delay in breastfeeding initiation by triggering oxytocin release and possibly compensating for the potential inhibiting effect of leptin on human lactation a third possible explanation for the lower prevalence of early breastfeeding initiation among obese women is the possibility that it may be difficult for the baby to attach to the breast as a result of additional body tissue larger areolas and larger breasts that reduce lap area 17 in this scenario social support may have positively affected breastfeeding by being a source of handson support as a cochrane systematic review showed although all forms of extra support had a positive impact on breastfeeding outcomes strategies that rely on facetoface support are more likely to succeed 16 possibly because they may include some form of physical support this form of extra support may be even more relevant for obese women as a study in the usa showed that obese mothers had lower odds of being exposed to hospital practices associated with improved breastfeeding outcomes including being given breastfeeding help by a staff member in that study many providers expressed that they disliked or even dreaded providing postpartum care for obese women as it required extra work 35 findings from our study have important longer term implications as evidence suggests that early breastfeeding initiation may protect obese mothers from failure to breastfeed for longer kair et al 36 showed that obese mothers had three times greater odds of exclusively breastfeeding at one week if they reported exposure to the fourth step of the ten steps of successful breastfeeding ie uninterrupted skintoskin contact since birth and support for mothers to initiate breastfeeding within one hour after birth moreover exclusive inhospital formulafeeding is a risk factor for delayed onset of lactation 37 other covariates associated with breastfeeding initiation within the first hour were maternal age parity geographical region receiving information about breastfeeding during prenatal care hospital funding sources combined with bfhi accreditation status and type of delivery these findings are consistent with previous studies 4 our findings documented a negative dose response relationship between prepregnancy bmi and early breastfeeding initiation among those without social support however among those with social support obesity was not a risk factor for delayed breastfeeding initiation from a public health perspective our findings call for supporting initiatives allowing the presence of a companion during childbirth paying special attention to the psychoemotional and biomedical needs of women with excessive body weight previous interventions focusing on increasing breastfeeding duration and exclusivity in obese women have not been successful 17 interestingly none of them focused on strengthening the supportive role from companions moreover breastfeeding within the first hour of life was not explored in any of the studies therefore it is also important to design and test interventions that provide additional support to breastfeeding women with excessive body weight for success with early breastfeeding initiation and their longer term breastfeeding plans such interventions should consider including professional as well as birth companions social and breastfeeding support one limitation of our study was the use of anthropometric data that was not directly measured by the research team likewise the outcome was based on maternal selfreport and was not directly observed by the research group possibly leading to recall bias however despite these limitations our findings are based on a national survey with countrywide representation to our knowledge this is the first study to show a buffering effect of social support on the relationship between prepregnancy bmi and breastfeeding within the first hour of life among women with excessive body weight conclusion consistent with other studies our findings show that obese mothers are less likely to breastfeed after birth although the mechanisms by which breastfeeding initiation is affected by excessive weight are not clear our study indicates that social support may play an important role in this relationship by promoting breastfeeding initiation our findings call for further exploring how best to design interventions that include inhospital companions to help obese mothers to successfully initiate breastfeeding within one hour after birth the data underlying the findings cannot be made publicly available in order to protect patient privacy and comply with brazilian law the authors declare that data from this study are available upon request directly to the vice presidency of education information and supporting information s1 table full results of the final adjusted models for the association between prepregnancy bmi and breastfeeding in

many biological social and cultural barriers for suboptimal breastfeeding practices have been identified in literature among these excessive prepregnancy weight has been identified as a risk factor for not initiating breastfeeding early social support coming from social networks eg a partner family or friends or health care providers has been positively associated with breastfeeding this study aimed to examine the association between prepregnancy excessive weight and breastfeeding within the first hour after birth and if social support modifies this associationnational populationbased study conducted with 21086 postpartum women from february 1 2011 to october 31 2012 in 266 hospitals from all five regions of brazil social support was defined as having a companion at the hospital main effects and interactions were tested with multivariable regression analysesmultivariate regression analyses indicated that class i and class ii obese women had lower odds of breastfeeding within the first hour when a companion was not present aor 059 95 ci 042082 and aor 059 95 ci 036097 respectively but there was no association when the companion was present among overweight and obese women the predicted probability of breastfeeding within the first hour was lower for those without a companion this association was not found among those with normal prepregnancy bmi

introduction globalization is currently the cause of economic competition between countries resulting in uncontrolled exploitation of natural resources 1 as a result of uncontrolled development various issues of environmental damage have emerged which are a very real threat to human life various environmental damage problems faced by humans include deforestation climate change extinction of flora and fauna diversity due to pesticide contamination damage to aquatic and forest ecosystems 2 the problem of environmental damage has become part of the reality of human life in the 21st century so that it requires awareness concern and human participation in preserving the environment 3 the cause of environmental damage is an error in ichelss managing the environment that is not oriented towards sustainability and the existence of an ecological crisis namely the relationship between humans and nature that is bad so as to create environmental problems 4 environmental problems are currently one of the global citizenship issues syaifullah et al 5 revealed that there are five global citizenship issues that are problems and challenges faced by countries in the world namely economic inequality technological advances access to information conflicts of interest between developed and developing countries which resulted in damage to ecosystems forest deforestation and uncontrolled population explosion environmental damage has always been the impact of problems caused by human actions at this time based on a study conducted by shaw oikawa 6 states that humans are currently facing environmental crises such as pollution that occurs in water and air depletion of the ozone layer massive deforestation of tropical rainforests global warming a crisis in biodiversity and socioeconomic problems as a result of environmental problems environmental destructive behavior is the main factor that causes the environmental crisis dermawan 7 categorizes environmental destructive behavior in three categories namely increasing population exploitation of nature such as forests and seas and pollution contained in water soil and air the impact of the issue of environmental damage must be addressed immediately at this time an effort is needed to control various issues of environmental damage for a better life in the future 8 controlling the issue of environmental damage is not only the burden and responsibility of the government but all citizens in it it requires the participation of all citizens in managing the environment 9 efforts to preserve environmental management by citizens are not only limited to formal education but can be through citizen communities or community civics that are engaged in environmental issues 10 in civic education it is known as the concept of ecological citizenship which is an idea about emphasizing citizens rights to a healthy and proper environment which means that it requires participation between citizens communities and governments to ensure a proper environment 11 the emergence of the idea of the ecological citizenship movement is also a civic virtue that expects no strings attached unlimited territory and noncontractual so it can be understood that ecological citizenship focuses on acting virtuously towards the environment for the common good 12 regarding the situation in indonesia efforts to deal with environmental damage through civic education are limited to school education only even though in reality doi 1018502kssv9i214904 ichelss environmental damage is done by adult citizens who are no longer in school so it is necessary to handle it still well through the community in the sociocultural domain namely corporate civic engagement or which is understood as job creation based on handling public issues and community civic education which can be understood as community civic education 12 environmental damage control in the community will be more successful if it is based on existing local wisdom sendi indigenous people as part of indigenous communities in indonesia sendi indigenous people have local wisdom in managing customary institutions have their own government structure and customary law system 13 in the context of preserving the environment the sendi indigenous community has various regulations regarding the management and utilization of the environment such as the tradition of basuhan cutting trees that are limited to a certain time preserving and preserving springs called kucur tabut 14 the existence of disasters that have occurred the sendi indigenous community seeks to carry out a better life with the principle of sustainability this research seeks to reveal the existence of the sendi indigenous community who seeks to care for their environment after the disaster method the reason for choosing a case study strategy in this research is based on yins perspective 15 that case study research usually focuses on how and why questions has limited time in controlling the phenomenon under study and focuses on contemporary result and discussion the intensity of disasters due to the ecological crisis is caused by the lack of public awareness in protecting the environment so there is a need for awareness in managing the environment with the concept of sustainability and the existence of local wisdom is one of the main factors in resolving the ecological crisis the sendi indigenous community lives in the area where two gurung slopes meet namely mount welirang and mount arjuno and has a local identity called sengkalaning sendi environmental problems that currently occur based on a study conducted by usaid 16 found that the topography of pacet village pacet subdistrict mojokerto regency as the place where the sendi indigenous community lives is in a high disasterprone location in landslides and flash floods as a result of climate change the data obtained that during the period 20022016 hydrometerological disasters occurred factors causing disasters such as landslides and flash floods in that period were due to the conversion of forest and agricultural land into various tourist attractions and restaurants that did not comply with the principles of life of the indigenous people of the joints based on the unrest and concerns of the indigenous people of the joints against disasters that could recur the idea emerged to form an ecological movement based on the local wisdom of the joints local wisdom in managing the environment is a direct application of civic ecology 17 the sendi indigenous community has various activities in preserving the environment in the context of preventing and overcoming hydrometeorological disasters that have occurred in the location where they live the activities they carry out are guided by existing local wisdom if further understood local wisdom in indonesia is centered on food drinks natural resource management literary works and sculptures 18 sengkalaning diri as the identity of the sendi indigenous people relating to relationships with nature and fellow humans and god 14 in relation to nature the indigenous people of sendi have traditions such as basuhan ngangsu banyu aras and babakan kucur tabut according to an interview conducted with ki demang supardi local wisdom cannot be transferred but can be inherited through exemplary methods and the adequacy of a conducive or safe environment 20 the traditions carried out by the sendi indigenous people are a form of inheritance that is taught to their generation through the exemplary method related to the inherited tradition it is the urgency of ecological awareness that is poured into real activities by citizens to foster loyalty to nature 21 various traditions that have been carried out are one form of effort to strengthen ecological citizenship carried out by indigenous leaders in the form of traditions that have been mentioned the response obtained by strengthening environmental awareness has a positive value and the enthusiasm of the sendi indigenous people in managing the environment is much better because of the encouragement and consultation of residents who feel the environment is much better than before besides that there is cooperation carried out by the leaders of the sendi indigenous people who are related to environmental conservation activities through various traditions such as walhi east java and pplh this is done to provide an understanding of the importance of managing a good environment so that the relationship between humans and nature goes well and does not result in the emergence of various disasters that harm humans themselves in addition the sendi indigenous community formed a tourism manager as a result of the development and utilization of environmental potential that can be used to attract tourists and contribute to the economy of the sendi indigenous community which is still in accordance with existing local wisdom activities carried out by sendi integrated educational tourism as an existing tourism manager provide strengthening of environmental awareness to visitors who come to do tourism activities in the destinations provided the visitors are given education about what local wisdom exists in the sendi indigenous community especially those related to environmental management such as when cutting down trees it must be replaced with a number of felled trees the use of predetermined traditional clothing commonly referred to as ageman and building houses where residents live with the characteristic of having a sustainable doi 1018502kssv9i214904 ichelss concept because development is very environmentally friendly when related to the study conducted by dash 22 states that ecological citizenship contains moral virtues that guide humans to do good to nature and the environment through a form of solidarity with the earth when viewed from the perspective of ecological citizenship by dash what is done by the manager of sendi integrated educational tourism is part of one of the life choices of the sendi indigenous people to manage the environment for a decent life based on sustainability and local wisdom this is also in line with fahlevis opinion 23 which states that in managing the environment one must look at the conditions that surround humans in their activities meaning that the environment around where people live in their activities is a top priority in protecting and managing the environment tourism management efforts through integrated educational tourism managed by the sendi indigenous community have a very good impact on their lives this is based on the results of interviews with subari as kasinoman and chairman of the sendi integrated educational tourism management the joint indigenous community is very much helped by the existence of integrated educational tourism which has a good impact on the economic sector and the environment because in terms of the economy we initially only depended on agriculture and plantations but we realized that there was potential that we could develop into tourism but still in accordance with our wisdom in managing the environment interview dated may 13 2023 the form of activities carried out by sendi integrated educational tourism based on local wisdom in the sendi indigenous community contributes to environmental protection by involving all components as part of a strategy to strengthen ecological citizenship and has a very good impact on community members and nonmembers this can be seen from the increase in capability in managing the environment properly and participation which was initially lacking has increased due to the involvement of all components in the sendi indigenous community however this does not mean that there are no obstacles in implementing strengthening ecological citizenship through existing forms of activities in managing the environment based on local wisdom there are obstacles in managing the environment including internal and external factors from internal factors there are problems in the form of lack of community compatibility in supporting new programs that do not have a direct economic impact this is a challenge in itself that is very hampering for the strengthening of ecological citizenship carried out by its administrators to members of the sendi indigenous community besides that the impact of lack of compatibility doi 1018502kssv9i214904 ichelss in social life requires the existence of socialization activities getuk tular to be able to arouse the solidarity of community members another internal factor is the economic needs of the community which mostly depends on agricultural products plantations and trade in the tourism area developed by the sendi customary society because of economic pressure some people are forced to carry out cooperation activities that are not in accordance with existing local wisdom such as renting out their land to be used as a food stall which should not be allowed to carry out rental activities with parties outside the sendi customary society when viewed from dobsons opinion 12 behavioral factors are dominant factors in internal obstacles deviant behavior due to economic pressure and selfishness has an impact on solidarity in managing the environment the obstacles from external factors are caused by land ownership issues that still have no meeting point between the sendi indigenous people and perhutani which began in 1999 this is based on the history of land ownership and forests in the area where they live until in 2007 there was an arrest of mr toni as a customary uncle who was accused of carrying out unlicensed activities in the pine production forest owned by perhutani in addition this conflict led to a conflict that was trying to be resolved through recognition of the existence of the sendi indigenous community through the making of regional regulation no 4 of 2018 which was used to establish a preparatory customary village and was also finally revoked because it conflicted with the village law which must have a minimum of 6000 residents to form a new village government the impact of land status issues and recognition has an influence in providing strengthening of ecological citizenship in the implementation of various traditions one of which is the tradition of ngansgu banyu aras which in its implementation was once disputed by perhutani because it is located in a production forest area and a limited area where other people are not allowed to enter without special permission from perhutani conclusion as a community that has a residential location in a disasterprone area it is necessary to provide awareness in strengthening ecological citizenship by the sendi indigenous

environmental degradation is currently causing many hydrometeorological disasters ecological citizenship as part of the concept of civic education has the aim of forming smart citizens with environmental character this study analyzes the form of strategies to strengthen ecological citizenship in sendi indigenous peoples of mojokerto regency along with the obstacles and challenges they face in strengthening environmental awareness based on local wisdom the study uses qualitative research methods with a case study design data were collected through direct observation in the environment where the joint indigenous community lives interviews with kasepuhan pamengku adat and members of the sendi indigenous people and documentation data were analyzed using interactive data analysis methods it was found that the sendi indigenous people have a strategy to strengthen ecological citizenship based on local wisdom namely sengkalaning sendi which regulates relationships with nature and the environment in collaboration with various stakeholders and ngos such as walhi and pplh the obstacles encountered by the sendi indigenous people are mainly internal and external factors

background attending to the needs of a family member who has suffered a stroke has been the subject of considerable research 1 2 3 4 5 similar to other areas of caregiving the emphasis has been on burden associated with this role conceptualized predominantly in terms of emotional distress social disruptions and economic limitations 1 2 3 fewer studies however have investigated the more global construct of quality of life in caregivers of a family member following stroke yet an understanding of how caregiving influences elements such as life satisfaction psychological social and physical functioning is important in fully appreciating the impact of caregiving 36 of those studies that have been conducted in general the findings indicate that caregiving negatively impacts on quality of life 1 2 3 based on white et als conceptual model of quality of life for family caregivers of stroke survivors the caregiving situation is thought to directly and indirectly influence caregivers quality of life indirectly the demands of the caregiving situation are influenced by environmental factors and caregiver factors 6 for example appraising caregiving as restrictive and burdensome can negatively affect caregiver quality of life 7 whereas caregiver confidence in their knowledge about providing care and selfefficacy in the caregiving role have been found to be positively related to caregivers quality of life in the domains of vitality and mental health 8 the latter finding relates to a smaller but growing body of literature examining the positive aspects of caregiving an area that has been largely neglected in the caregiving literature 9 yet studies reveal that providing care to a family member can decrease anxiety and depression increase a sense of fulfillment and selfesteem and bring greater closeness in the relationship 10 11 12 indeed qualitative studies where the caregiving role is explored in more depth have identified more of the positive aspects to this role 45 thus recognition that caregiving burdens and rewards can coexist 13 adds to the importance of understanding both the positive and negative aspects of this experience in caregivers of stroke survivors and how these roles relate to quality of life quality of the relationship cartwright archbold stewart and limnadri emphasize the importance of a positive quality relationship in finding enrichment from caregiving 14 the importance of the dyadic relationship cannot be overstated since caregiving occurs within the context of ongoing relationships between family members and adjustment to the impact of stroke brings about major changes and transformations in relationships 1516 in the psychological literature relationship satisfaction has been shown to moderate the effects of anxiety as a consequence of caregiving 17 evidence from caregivers of older frail family members also shows that caregivers in relationships characterized as high in mutuality and closeness report lower levels of caregiver strain 1819 moreover active helping in relationships high in mutuality and interdependence can have positive effects for the care provider 20 surprisingly few quantitative studies however have investigated the relationship on caregiver outcomes in people with stroke 2122 equity in the relationship relatedly reflections of mutuality such as reciprocity are important in finding satisfaction and meaning in the caregiving relationship 1423 equity theory in social relations is useful in understanding reciprocal exchanges between caregiver and care recipient 2425 equity theory posits that individuals strive to maintain balance between benefits and contributions within their relationships inequity arises when individuals give more than they receive or receive more than they give for example when one member of the dyad becomes ill and is reliant on the other member for care then the balance may become inequitable equity theory predicts that inequity is psychologically uncomfortable for both members of the dyad therefore members are motivated to restore balance studies have identified that inequity in relationships can lead to negative emotions 26 27 28 reciprocal exchanges within caregiving relationships there is the implicit assumption that exchanges of support are unidirectional flowing from caregiver to passive care recipient however even when a family member is ill and it becomes difficult to reciprocate with material tangible support there is evidence that exchanges of a more interpersonal nature such as love warmth and affection may still occur and be important for caregiver wellbeing 14182729 gleason and colleagues found that providing support within the context of a relationship characterized by exchanges of emotional support positively enhanced mood 27 there is also evidence to suggest that reciprocity may decrease caregiver burden 182829 in a study of caregivers of frail older adults with illness or disability reid et al found that exchanges of respect regard and commitment between caregiver and care recipient and balance in caregiving between caregiver and other family members were associated with lower levels of developmental physical social and emotional caregiver burdens 29 to date however little is known about the interactional aspects of the relationship in relation to caregiver outcomes such as caregiver role and healthrelated quality of life in caregivers of a family member following a stroke aims to address the aforementioned gaps in the existing literature the present study aims to test the following research hypotheses based on equity theory hypothesis 1 caregiver perceived reciprocity will be significantly related to positive aspects of the caregiver role and inversely related to negative aspects of the caregiver role hypothesis 2 satisfaction with the relationship will be related to balance in give and take hypothesis 3 caregivers who are underbenefiting in the current relationship will have significantly higher scores on the caregiver role negative dimension compared to those who are equitableoverbenefiting from the relationship secondary aims are to examine the relationship between hrql caregiver role relationship satisfaction and reciprocity in family caregivers of partners with stroke to examine predictors of positive and negative aspects of the caregiver role and hrql and compare caregivers hrql to a normative noncaregiving sample methods design a crosssectional survey design with a major correlational component was used the research is part of a larger project examining family caregiving for individuals following stroke findings from the main study have been presented elsewhere 26 research ethics research ethics approval was granted from the university of ottawa research ethics board and the ottawa hospital rehabilitation centre research ethics board procedures and measures a letter describing the study was sent from the medical director of the ottawa hospital rehabilitation centre stroke service to those eligible included with the letter was a prestamped postcard for caregivers to return if they chose not to participate two weeks later survey packages were sent to those who had not declined participation and again after four weeks if the surveys were not returned after a further two weeks the research nurse contacted those who had not returned the survey to enquire if they were interested in taking part and whether they required assistance completing the survey the research nurse conducted home visits to assist those requiring help to complete the surveys as part of the larger project care recipients provided demographic information and completed a measure of quality of life these data were included in this study to allow comparisons between the variables and caregiver hrql and role care recipients quality of life was assessed using the strokespecific quality of life scale 31 the ssqol is a reliable and valid diseasespecific measure that assesses 12 domains pertinent to individuals with stroke the ssqol has three response formats based on a 5point scale 1 could not do it at all to 5 no trouble at all 1 total help to 5 no help needed and 1 strongly agree to 5 strongly disagree for the present study the overall score was used this is derived from an unweighted average of the 12 domains the internal consistencies for the 12 domains ranged from α 77 to α 95 in the current study the caregiver survey contained measures of caregiver role hrql and caregivers perceptions of reciprocity and balance in the relationship and relationship satisfaction demographic information was also collected caregiver hrql the sf36 was used to assess hrql this is a widely used measure in health research 32 that has been used with family caregivers of patients with stroke 33 the sf36 provides a general assessment of eight different health domains physical functioning role limitations due to physical problems bodily pain general health vitality social functioning role limitations because of emotional problems and mental health each is scored summed and transformed to a scale ranging from 0 to 100 with 0 being the worst possible health state and 100 the best possible health state 31 in addition sf36 physical and mental component summary scales were computed according to standard scoring algorithms 34 internal consistency for the sf36 pcs was α 85 and for the sf36 mcs α 81 caregiver role the caregiver reaction assessment was used to measure the perception of caregiving on four negative subscales which we summed to form cra negative dimension and one cra positive dimension 35 items are rated on fivepoint likert scales ranging from strongly disagree to strongly agree with higher scores reflecting greater caregiver reaction in general the cra has been found to be a reliable and valid measure 35 in the present study the cra negative subscales had reliabilities of α 73 to α 89 the internal consistency of the positive scale was α 83 the cra has been used to assess the caregiving role in caregivers of people with stroke 3637 reciprocity the quality and intensity of exchanges between the care recipient and caregiver were assessed by caregivers with the 22 item caregiver reciprocity scale ii 38 the scale consists of four subscales representing different dimensions of reciprocity where each item is rated on a 5point scale ranging from 1 to 5 scores for the subscales are calculated by summing the items after reverse scoring selected items higher scores represent greater levels of perceived reciprocity there is evidence to support the reliability and validity of the tool 38 the internal consistency of three of the crs subscales was acceptable ranging from α 72 to α 83 the reliability for the balance in family caregiving subscale however was low α 66 perceived equity in the relationship caregivers completed a single item question with a 5point scale based on the hatfield global measure 39 the item asks the respondent to describe the give and take in their relationship the five response options range from my partner is doing more for me than i am doing for himher to my partner is doing a lot less for me than i am doing for himher this question was developed by kuijer et al and has been found to be sensitive to perceived changes in equity currently and before illness among couples facing cancer 40 two items were used in the present study to assess caregivers perceptions of balance in the relationship currently and prior to the stroke relationship satisfaction the quality of marriage index was used to evaluate caregivers views on the degree of satisfaction in their relationship 41 the measure is widely used and has excellent reliability discriminant and convergent validity 42 this is a brief 6item measure with seven response options ranging from very strongly agree to very strongly disagree the scale also includes one item that evaluates the degree of happiness in the relationship on a one to ten scale from unhappy to perfectly happy qmi scores tend to be positively skewed therefore the scores were transformed following the procedure recommended by norton 41 in this study α 94 indicating excellent reliability analysis all data were checked to ensure that the test assumptions for the statistical analyses were met descriptive statistics were calculated to describe participants hrql relationship satisfaction reciprocity balance in the relationship and caregiver role to describe our sample in terms of their hrql we compared participants sf36 scores with data from a normative sample derived from us population norms 34 using cohens d to compare the standardized differences and interpreted the effect sizes as follows 2 small 5 medium and 8 large to examine the relationship between the variables and address our hypotheses caregiver perceived reciprocity will be significantly related to cra positive dimension and inversely related to cra negative dimension and satisfaction with the relationship will be related to the current balance in give and take we used bivariate pearson r correlations to identify predictors of caregiver hrql and cra positive and negative dimensions we conducted a series of multiple linear regression analyses entering variables simultaneously variables were selected based on the literature clinical significance and p 0 05 we anticipated that care recipient quality of life and negative aspects of the caregiver role would to be significant predictors of caregiver hrql 1 2 3 4 5 6 7 8 we did not enter caregiver hrql as a predictor of caregiver role as it was entered as a predictor of hrql instead the focus was the care recipient and the relationship dynamic relationship satisfaction and reciprocal exchanges have been identified as important in finding satisfaction in caregiving and for reducing the burdens associated with caregiving 10 11 12 18 19 20 21 22 27 28 29 based on the available literature therefore we anticipated that quality of the relationship and reciprocity would predict positive aspects of the caregiver role and care recipient quality of life and reciprocity negative aspects of the caregiver role our a priori power analysis based on at most six predictors using an alpha 05 power 80 and large effect size 35 indicated that our sample size would need to be at least 46 participants 43 to test our third hypothesis that caregivers who are underbenefiting in the current relationship will have scores on the cra negative dimension than those who are equitable or overbenefiting from the relationship we divided the group into two underbenefiting and equitableovererbenefiting based on the balance in their current relationship we then compared the two groups on cra negative dimension using a ttest alpha was set at 05 results descriptive statistics caregiver healthrelated quality of life comparing descriptive statistics for caregiver hrql to normative data from the general us population 34 we found that scores were lower for all sf36 domains notably the largest differences were seen for limitations in physical role followed by limitations in physical functioning and emotional role caregiver role caregivers scores on the four negative cra subscales were disrupted schedule financial problems lack of family support and caregiver health problems the positive domain of caregiver selfesteem was m 2431 out of a possible 35 note 1 norms for the general us population sd 267 indicated that on average perceived reciprocity was high for all of these domains caregiver perceived reciprocity scores relationship satisfaction in general the majority of participants were happy in their relationship with 50 rating between six and 10 scores on the qmi indicated that in general participants were satisfied with their relationship caregiver perceived equity in the relationship when asked about the give and take in their current relationship 34 reported that they were doing more for their partner then heshe was doing for them of these 23 indicated that they were doing a lot more for their partner only one participant indicated that there partner was doing slightly more for them while 21 felt that the balance was equitably this contrasts with the balance in the relationship prior to their partners stroke where more than half felt the balance was equitable and 16 of the participants were overbenefiting only one participant was contributing a lot more and seven slightly more to the relationship than their partner was contributing correlations between caregiver perceived reciprocity caregiver role and relationship satisfaction none of the care recipient or caregiver demographics were significantly associated with relationship satisfaction perceived reciprocity or caregiver role table 3 contains a summary of the correlations between reciprocity caregiver role and relationship satisfaction our hypothesis based on equity theory that reciprocity would be related to positive and inversely related to negative aspects of the caregiver role were partially supported cra positive dimension scores were significantly correlated with three of the four crs ii scales however there was little support for an inverse relationship between cra negative dimension scores and reciprocity the only association was an inverse relationship with balance in family caregiving hypothesis which stated that caregiver satisfaction with the relationship would be related to the current balance of give and take in the relationship was not supported of note was the significant correlation with previous balance in the relationship predictors of caregiver healthrelated quality of life with the exception of an inverse relationship between sf36 pcs and care recipient age and caregiver age none of the other demographics were significantly associated with caregivers hrql as expected care recipients ssqol scores were significantly correlated with all the caregiver sf36 subscales physical functioning role limitations due to physical problems bodily pain general health vitality social functioning role limitations due to emotional problems and mental health there were also modest to strong inverse relationships between the cra negative dimension and sf36 pcs and mcs we examined which factors were predictive of caregiver hrql using the sf36 pcs and mcs multiple linear regression analyses were conducted entering variables simultaneously into the model since care recipient and caregiver age were highly correlated we only included care recipient age as this was more highly correlated with sf36 pcs the cra negative domain care recipient age and quality of life were entered into the model to predict sf36 pcs ssqol did not contribute significant independent variance beyond that of care recipient age and cra negative domain as we expected the cra negative domain and ssqol to predict mental component summary scores these variables were entered into the model when entered together ssqol did not contribute significant variance beyond that of cra negative domain as a single predictor is equivalent to the correlation we did not produce models for sf36 mcs predictors of caregiver role to identify predictors of cra positive and negative domains we conducted multiple linear regression analyses relationship satisfaction and three of the four crs ii scales that were significantly correlated at the bivariate level with the dependant variable were entered into the model to predict cra positive domain only qmi and crs ii intrinsic rewards of giving significantly predicted independent variance accounting for 24 of the variance in the cra positive domain for the cra negative dimension two predictors were entered the crs ii intrinsic as this was the only reciprocity subscale significantly correlated with the dependant variable and care recipient quality of life these two predictors accounted for 31 of the variance in cra negative dimension inequity in the relationship and caregiver burden comparison on the cra negative domain scores between caregivers who were currently underbenefiting and those who were equitable overbenefiting indicated that there was a significant difference between the groups 203 p 02 this finding supports hypothesis that caregivers who are underbenefiting in the current relationship have higher levels of caregiver burden than those who are equitable or overbenefiting from the relationship discussion this study set out to examine the relationships between hrql caregiver role reciprocity balance and relationship satisfaction in a sample of caregivers whose partner had experienced a stroke furthermore using equity theory and reciprocity as a basis we made several predictions regarding the relationships and likely outcomes not surprisingly following the family members stroke there was a change in the balance of give and take in the relationship with almost a third of caregivers reporting that they were currently doing more for their partner than their partner was doing for them this contrasts sharply with balance in the relationship prior to their partners stroke where the majority perceived the relationship as equitable or were actually overbenefiting from the relationship from the perspective of equity theory balance is important in maintaining satisfaction in the relationship 2544 we found partial support for this as relationship satisfaction was associated with previous balance prior to the care recipients stroke but not current balance in the relationship this suggests that balance may be important generally in relationships but may become less important in terms of relationship satisfaction when one member is in need for instance following illness such as a stroke indeed perceptions of inequity may be less salient in high quality relationships as both members of the dyad are motivated to maintain a mutually supporting relationship 28 however with respect to the caregiver role current balance was important supporting our hypothesis that caregivers who are currently underbenefiting in the relationship have higher levels in the caregiver negative domain than those who are equitable or overbenefiting from the relationship similar findings have been reported in caregivers whose partners have cancer or multiple sclerosis 28 in our study we found that there was a high degree of perceived reciprocity with exchanges between members of the dyad rather than in one direction from caregiver to care recipient reciprocity was not only important in terms of relationship satisfaction but also in terms of the caregiver identifying positive aspects of their role this finding supports previous studies where exchanges of an interpersonal nature have been found to still occur and be important for caregiver wellbeing 14182729 one explanation for the associations is that strong relationships characterized by mutuality and satisfaction may be derived from being able to help one another in times of need certainly being able to maintain care recipients dignity and selfesteem can be a source of satisfaction 45 another possible explanation is that those who are satisfied in their relationship are likely to be more invested in the relationship and this may enhance their perception of competence in the role as caregiver 28 the findings add support to a smaller number of studies that have examined the caregivercare recipient relationship following stroke 2122 they highlight the importance of health professionals including assessments of the context of care in terms of the relationship dynamics and how the caregiver is coping with this role also the findings point to potential interventions aimed at encouraging reciprocal exchanges and helping caregivers find meaning in their role approaches to restoring the perception of equity include encouraging reciprocal exchanges between care recipient and caregiver care recipients with strokerelated limitations that are limited in their ability to provide material tangible support could be encouraged to offer reciprocal exchanges of a more emotional nature such as affection and caring toward their caregiver indeed there is some evidence to support counselling interventions directed at restoring the perception of equity and fostering reciprocity in couples facing cancer 46 in our study we found less support for our prediction that a lack of reciprocity would be inversely related to negative aspects of the caregiver role only balance in family caregiving was inversely related a possible explanation for these contrasting findings consistent with gouldners premise is that needs rather than reciprocity may prevail under certain conditions 47 under circumstances where the care recipient is ill and less able to reciprocate caregivers may focus on care recipients needs as they may come to dominate with little expectation of reciprocation however when there is reciprocation these exchanges may positively affirm the caregivers contributions and bolster selfesteem caregivers perceptions of caregiving in our study were comparable to other studies with caregivers of stroke survivors 3637 like teel comparing the cra scores with those of caregivers of a family member with cancer 48 indicates that caregiving for people with stroke is perceived as more negative with higher scores on the negative subscales and lower scores on the positive subscale our findings also add to the literature in demonstrating that caregiving can be a positive experience for some 45 9 10 11 12 and that both rewards and burdens can coexist 13 research directed toward an understanding of relationship factors that influence positive and negative role perceptions and caregiver outcomes are particularly important for designing interventions to promote the wellbeing of both members of the dyad possible avenues for further investigation include attachment between caregiver and care recipient and how these bonds influence motivations for responding to the needs of another during times of illness 9 comparing caregivers hrql to population norms our sample had lower levels in all domains these findings parallels others in showing that caregiving can negatively impact on quality of life 1 2 3 the multiple regression analysis indicated that older care recipients and caregivers who are themselves older who are caring for a partner with more impaired functioning and who perceive the caregiver role as having a greater negative impact have lower hrql physical component summary scores similarly caring for a partner with more impaired functioning and finding caregiving burdensome was associated with the hrql mental component summary score therefore health professionals caring for individuals following a stroke should be mindful of those caregivers likely to be most affected and implement strategies to support them in their role the study has several limitations first the low response rate meant that the sample size was small consisting of mainly female caregivers recruited through one stroke rehabilitation clinic setting therefore the generalisability to male caregivers and those from other settings cannot be determined furthermore the extent to which the sample is biased cannot be determined as no information was collected on nonresponders a larger more diverse sample would permit more sophisticated multivariate analyses including an analysis of gender and cultural variations second our inclusion criteria meant that caregivers were providing care to stroke survivors whose cognitive ability was not significantly impaired the experiences of caregivers of individuals with more significant strokerelated cognitive and communication impairment may be very different from the present sample third the crosssectional correlational design meant that we could not determine the directionality or determine causality between the variables future research would benefit from examining the caregiving relationship over time as caregivercare recipients transition to the changes brought about by the stroke conclusions our findings suggest that the context of caregiving is important in terms of the relationship caregivercare recipient exchanges and health and wellbeing of caregivers therefore a more comprehensive understanding of the caregiving situation should incorporate these aspects this will place health professionals and researchers in a better position to develop and implement interventions aimed at improving the wellbeing of both members of the dyad as they adapt to the changes brought about by the stroke list of abbreviations cra caregiver reaction assessment crs ii caregiver reciprocity scale fim functional independence measure healthrelated quality of life qmi quality of marriage index sf36 mcsmental component summary score sf36 physical component summary score ssqol stroke specific quality of life scale author details 1 school of nursing faculty of health sciences university of ottawa 451 smyth road ottawa ontario k1h 8m5 canada 2 school of psychology faculty of social sciences university of ottawa 200 lees avenue ottawa ontario k1n 6n5 canada 3 the ottawa hospital rehabilitation centre 505 smyth road ottawa ontario on k1h 8m2 canada 4 faculty of medicine university of ottawa 451 smyth road ottawa ontario k1h 8m5 canada competing interests the authors declare that they have no competing interests

background since the majority of stroke survivors return home following their stroke families play a pivotal role in their care few studies have addressed both positive and negative aspects of this role or the broader construct of healthrelated quality of life hrql furthermore little consideration has been given to the context of care in terms of relationship quality and reciprocity the present study examined the relationships between caregiver quality of life hrql caregiver role relationship satisfaction balance and reciprocity in caregivers of partners who had experienced a stroke specific hypotheses were made based on equity theory in social relations methods fiftysix partner caregivers completed a postal survey that included measures of hrql sf36 caregiver role negative and positive aspects relationship satisfaction reciprocity and balance data were also collected on the care recipients quality of life stroke specific quality of life scale results compared to a normative sample caregivers hrql was lower for all sf36 domains care recipient and caregiver age care recipient quality of life and caregiver role negative significantly predicted physical component summary scores on the sf36 while care recipient quality of life and caregiver role negative significantly correlated with mental component summary scores relationship satisfaction and intrinsic rewards of caregiving were found to be important predictors of positive aspects of the caregiver role caregivers who viewed their relationship as less balanced in terms of give and take had significantly greater caregiver burden than those who viewed their relationship as more equitable conclusions the study highlights the importance of taking a broader approach to examining partner caregiving in the context of stroke in terms of the caregiving relationship and their influence on the health and wellbeing of caregivers

introduction the relationship between income inequality and poor health is one of public health sciences bestknown and most extensively researched topics yet there are no universal unambiguous and generally accepted interpretations of causeeffect relationships between measures of income inequality and general measures of health 1 2 3 4 5 6 7 or more specifically between inequality and specific health outcomes such as mental illness 8 9 10 11 12 13 14 at the individual level the case is clear low socioeconomic status predicts mental health problems 15 16 17 a study conducted with a lowincome multiethnic sample of 98 families recruited from the greater denver area in the us showed that povertyrelated stress was directly related to symptoms of anxiety depression 18 the researchers labelled persistent poverty as toxic for ones psychological health at the macro level two major theories have been presented to depict the general mechanisms of income inequality and health according to the stress theory 2 19 people constantly compare themselves with others low status in a community whether it be english whitecollar workers 2 or masai mara baboons 20 often results in feelings of inferiority increases stress and weakens health the theory predicts that in rich countries the direct effects of income inequality represent generalizable or particular psychological processes that influence health outcomes 21 inequality may subject mental health to stress while putting out of reach many potential sources of social support 22 it is also possible that wide social distances between people at the top of the income ladder cause stress and mental health problems the socalled materialist theory does not emphasize emotion and hormonal secretion but rather the actual living conditions of the rich and poor 23 24 the theory assumes that people with low incomes do not necessarily fare worse because they feel oppressed and inferior it could simply be that they have manifestly lower incomes and poorer services than those with higher incomes poor health is connected with a lack of resources not with psychological processes in an aggregate analysis problems tend to accumulate in areas where poor people live simply because there are many such people one of the most important criteria for causality in addition to statistical significance and strength is the temporal relationship 25 neither of the mechanisms makes it clear what time span is involved in the materialization of the relationship between income inequality and potential health effects income inequality would have had to appear before the effects became apparent it is perhaps a case of longterm exposure to a potential risk factor in the environment however lags in the associated effects of the various factors are most likely to be different as well which makes things more complex the question of exposure appears more difficult to handle in studies where longterm outcomes have been examined in this study we focus on a possibly more immediate health consequence of income inequality namely depression we calculate our final models for lags of one two and tree year with regard to gini index and relative poverty mental health is a suitable candidate for a grouplevel health outcome affected by income inequality 10 income inequality relates to the degree to which material resources are disproportionately distributed another way to look at income inequality is to consider it a measure of the distance between the most privileged and the most deprived within a particular social group in a study by galea et al 26 a neighbourhoods socioeconomic status was associated with the incidence of depression independent of individual ses and other individual covariates which highlights the importance of taking account of the contextual risk factors for mental health most research on the relationship between inequality and mental health has focused on crosscountry variation 10 12 13 where cultural social and institutional confounding factors may have distorted the results 12 previous findings from withincountry data are mixed an us study showed that the prevalence of depression was significantly associated with income inequalitythe more unequal the higher the prevalence of depression 14 another countylevel study showed income inequality to be significantly associated with depression among older americans 8 yet another comparative study of us states showed that the income inequality between them did not increase symptoms of depression 9 the aim of this municipallevel study is to evaluate whether changes in municipallevel gini coefficient or the share of people living in relative poverty are linked to changes in the use of antidepressants in finnish municipalities between 1995 and 2000 with its 336 municipalities and marked regional heterogeneity finland provides an unusual opportunity to examine the putative association between income inequality and the use of antidepressants broadly speaking there are two basic ways to tackle income inequality as a measurement concept the gini index or coefficient measures how income is distributed across a population within a defined geographical area while the relative poverty rate gives the proportion of households whose income falls below a certain level within a defined geographical area excluding them from ordinary living patterns customs and activities 27 in this study the gini index and relative poverty measure two different dimensions of inequality the gini index calculated for each municipality measures the distance between the richest and poorest households within the municipality insofar as people are expected to compare their standards of living with those of their peers in the municipality where they live this measure can be taken as an operationalization of the stress theory the effects of the municipal gini coefficient are deemed to reflect negative emotions such as shame and distrust which may be associated with disadvantage and perceptions of disadvantage that are claimed to be directly linked to depression the relative poverty rate calculated for each municipality using the national poverty threshold indicates the number of persons whose ability to participate in society is compromised according to a national standard this measure can be used to test the validity of the materialist theory while the gini index measures the distances within the municipality the relative poverty shows the share of people in the municipality who are left behind from all the others in the country in the early 1990s finland experienced a deep economic recession later labelled the great depression 28 following this recession the gap between rich and poor widened in finland more than in any other wealthy industrialized country at the time 29 the national gini coefficient rose from 222 in 1995 to 284 in 2000 and remained at that level until 2010 in 1995 the relative poverty rate was 79 per cent while in 2000 it was 121 per cent the rate continued to increase until 2010 but at a slower pace the rapid increase in inequality from a very low level makes finland an interesting case with regard to the health effects of income inequality 4 30 social sciences deal with contexts that are highly complex adaptive and not rigorously rulebound to gain a more accurate picture of the pathways through which material conditions affect health outcomes it is also necessary to study their effect on various health outcomes according to age groups and gender 5 data data were collected yearly from the sotkanet statistics and indicator bank from 1995 to 2010 sotkanet contains comprehensive municipallevel statistical information on welfare and health in finland whenever possible the data were collected separately for both males and females in three age groups young adults working aged persons and the elderly due to missing values and in order to reduce random variation in the dependent variable municipalities with less than 1000 inhabitants were excluded from the analysis of working aged and elderly populations while municipalities with less than 4000 inhabitants were excluded from the analysis of young adults the proportion of antidepressant users in a municipality was taken as a proxy for the prevalence of depression in the sotkanet database information on the use of antidepressants is derived from the prescription register of the social insurance institution of finland the social insurance institution is responsible for providing reimbursements for outpatient medical expenses well over 300 000 persons from a population of 54 million received reimbursements for prescription antidepressants in 2010 the medicines must be prescribed by a medical doctor nearly all outpatients on medication are included in the social insurance institutions prescription register where antidepressants are represented by anatomic therapeutic chemical classification group n06a the criteria for prescribing medication for depression may vary between physicians and geographical areas not all patients suffering from depression use antidepressants at the municipal level the use of antidepressants is affected not only by the number of persons suffering from depression but also by access to general practitioners care practices and modes of operation antidepressants are prescribed for other conditions as well as depression but depression remains the main indication for antidepressant use 31 data for the gini coefficient in the sotkanet database were collected from the income distribution register the coefficient gives the distribution of disposable income across households in the region under examination in this case particular municipalities the value ranges between 0 and 1 in the analysis the figure was multiplied by 100 the greater the value the more unequally is the income distributed relative poverty was measured in the sotkanet database by the general atriskofpoverty rate of the municipality the measure gives the proportion of persons in the municipality who live in households with incomes below the atriskofpoverty threshold the atriskofpoverty threshold was set at 60 per cent of each years median equivalent disposable income of all finnish households this was recalculated each year based on the entire populations income distribution at the national level accordingly the indicator describes the population having a low income by national standards as a proportion of the total population of the municipality both the gini coefficient and the atriskofpoverty rate are relative concepts the former takes account of the municipal income distribution while the latter is affected by changes taking place in median income and incomes below the median in the distribution of national income research on socioeconomic health differences has shown that social status and health affect each other at the macro meso and micro levels through a number of factors 4 given the known associations between depression and educational achievement 15 the models include a measure for education level the indicator for educational level gives the genderspecific proportion of persons aged 15 and over with a higher education persons with a higher education refers to those who have completed in a vocational institution studies of more than 3 years leading to a vocational qualification or those who have completed a polytechnic or university degree additionally we employ control variables for specific age groups for young adults we have the proportion of those not methods we used regression models where municipality is a fixed factor and gini coefficient relative poverty educational level and control variables were used as covariates as additional control variables we used gender and agespecific unemployment divorces share of young people out of education and employment and share of elderly single households the proportion of antidepressant users is a dependent variable the models were analysed separately for the three age groups and both genders a fixed effect method was chosen to emphasize the huge variation in the independent and dependent variables 32 and that we were particularly interested in this variation we assumed that the shortterm changes and fluctuations in income inequality measured both with gini index and relative poverty were positively associated with the use of antidepressants in the municipalities for each case we constructed four models the first includes the intercept and the municipal gini coefficient the second model is calculated for the intercept and the municipal relative poverty rate the third includes both the gini coefficient and an indicator of relative poverty and allowed us to study the effects of these factors visa vis each other finally the fourth model includes all the control variables results the proportions of antidepressant users increased in finland across all age groups and for both males and females between 1995 and 2010 the most dramatic changes concern young adults the proportion increased for young males by a multiple of 33 and for young females by a multiple of 48 the corresponding figures for working aged males and females were 14 and 15 respectively over the 15year period the proportion for over 65yearold males and females increased by 81 per cent table 1 gives the descriptive statistics of the variables calculated over the years and municipalities tables 2 to 7 present the results from the regression analysis for the three age groups and for both genders for young adult females changes in gini index were not positively associated with changes in the use of antidepressants while a statistically significant association was identified concerning changes in relative poverty and use of antidepressants the proportion of young adults using antidepressants increased in municipalities where the number of people living below the relative poverty threshold increased this association was statistically significant even after control variables were introduced an increase of one percentage point in relative poverty was found to have increased the use of antidepressants by 008 percentage points a weak but statistically significant positive association between changes in the use of antidepressants and relative poverty was found for young adult males in the adjusted model a positive association was discovered for both young adult females and males between changes in the proportion of antidepressant users and the proportion of those not being educated or trained only very few statistically significant associations between changes in the use of antidepressants and other factors were found for working aged individuals an increase in relative poverty was positively associated with the proportion of working aged males using antidepressants the association was significant also when gini index was included but disappeared once further control variables were added to the model changes in the level of education were negatively associated with changes in the use of antidepressants among working aged males the most surprising results were found for the elderly statistically significant counterintuitive associations were discovered for both females and males the proportion of elderly females using antidepressants decreased with increases in gini index and relative poverty the association proved robust even after control variables were introduced an increase of one percentage point in relative poverty decreased the use of antidepressants by 008 percentage points while a corresponding increase in gini coefficient decreased the use of antidepressants by 004 percentage points for males changes in relative poverty were negatively associated with changes in the use of antidepressants the association disappeared in the adjusted model changes in the proportion of those living alone were positively associated with the use of antidepressants among elderly females while a negative association was found for changes in level of education and proportion of antidepressant users among elderly females to gain more insight into the results for the elderly we ran an additional control model where we included average tax revenue for the municipality in order to determine if the increase in income inequality could have been caused by an increase in the general income level tax revenue was not available in the dataset before 2000 therefore control models were run from 2000 to 2010 the negative relationship between gini index and use of antidepressants among elderly females proved robust however the negative relationship between relative poverty and the use of antidepressants disappeared for both females and males as changes in the level of tax revenue reduced the effects of the changes in relative poverty finally we carried out another sensitivity test by running the analysis separately for municipalities with more than 10 000 inhabitants and for municipalities with more than 1 000 but less than 10 000 inhabitants the negative relationship between inequality and use of antidepressants among elderly table 5 glm analysis of depression among workingaged males in finnish municipalities discussion most studies on the health effects of income inequality have been carried out at the population level our results have demonstrated large agegroup and gender differences in the effects of economic measures and the use of antidepressants we have shown that the contextual mental health effects of economic changes on young adults may result from the different accumulation of exposures that have their source in the society namely in the numbers of people living in relative poverty given the dramatic changes in the use of antidepressant raising the prevalence of antidepressants by 008 percentage points per one percentage point increase in relative poverty is a fairly small effect changes in gini coefficient across municipalities were not positively linked with changes in the use of antidepressants on the contrary among elderly females antidepressants were used less in more unequal municipalities we were also able to show that being outside education and training was positively associated with antidepressant use among young adults while the proportion of elderly females living alone was positively associated with the use of antidepressants among elderly females we used the proportion of antidepressant users as an indicator of depression prevalence the variable is relatively well suited for use as an indirect indicator of the prevalence of depression 31 the use of antidepressants has increased in finland while the prevalence of depression measured by depression symptom scales has remained almost constant 33 further the use of antidepressants is particularly prevalent among the very old 34 there was a strong correlation between mental health diagnosis for invalidity pension and the use of antidepressant among 1864 year olds from 2003 to 2012 we may assume that older individuals would be more immune to the negative effects of growing income inequalities within the municipalities but it is more difficult to explain why inequality would protect elderly females from depression to gain more insight into the questions we inserted lags of one two and three years into the models with regard to gini index and relative poverty there was no consistent pattern of effects for the elderly or for working aged females for working aged males relative poverty was negatively associated with the use of antidepressants with lags of one two and three years the main question concerns underuse or overuse of antidepressants elderly females and working aged males living in poorer municipalities and elderly females living in more unequal municipalities may use fewer medicines due to lack of money and access to doctors 17 on the other hand overuse of psychotropics including antidepressants among the elderly has been a topic of concern in finland 34 antidepressants are also prescribed for other indications such as anxiety chronic pain and sleeping disorders 31 it is possible that overuse is more frequent in more equal municipalities a complementary explanation is that nonpsychiatric use of antidepressants is less common in more unequal municipalities it is also possible that the age breakdown of those over 65 years of age has affected the results to test these additional hypothesis we included a variable on the number of physicians per 10 000 inhabitants the variable was used for two age groups the elderly and the youth in finland 90 of employed people are covered through occupational health care which means that they receive outpatient health care services on those locations where they work the previous results proved robust showing that poverty and gini index were positively associated with the use of antidepressants among the youth and negative associated the use of antidepressants among the elderly the results indicate that lack of material resources may prevent the elderly from using antidepressants in relatively poor and unequal municipalities in finland this rise more concerns with regard to growing inequalities in health 35 to test nonlinear associations we modelled both gini index and relative poverty with categorical variable no considerable nonlinear associations of extreme levels of gini coefficient or relative poverty were discovered clearly municipal gini index is not a municipallevel factor that was positively associated with the use of antidepressants in any of the studied age groups in finland the direct health effects of within municipality income inequality did not represent generalizable or particular psychological processes that influence the use of antidepressants in finnish municipalities in short our results do not support the stress theory we found some support for the materialist theory by demonstrating positive relationships between changes in the use of antidepressants among young adults and working aged males the results thus point to a weaker rather a limitation of our study is that we have no information on the distribution of antidepressant use between psychiatric and nonpsychiatric indications among finnish municipalities a major limitation of this approach is the possibility of so called ecological fallacy which resulted from the nonavailability of individual level data for this study municipalities do not become depressed individuals do we were not able to determine if those suffering from economic deprivation were actually the same individuals as those using antidepressants multilevel analysis utilizing both individual level longitudinal data on depression measures and local level contextual factors are needed for more detailed analysis conclusions changes in within municipality gini index were not positively associated with changes in the use of antidepressants in studied finnish municipalities between 1995 and 2010 more young adult females used antidepressants in municipalities where relative poverty increased while fewer elderly females used antidepressants in municipalities where gini index increased supporting information

most inequality research on the relationship between inequality and mental health has focused on crosscountry variation findings from withincountry data are mixed we examined whether changes in municipal gini index or in the share of people living in relative poverty were linked to changes in the use of antidepressants in several finnish municipalities between 1995 and 2010 we found that more young adult females used antidepressants in municipalities where relative poverty had increased changes in municipallevel gini index were not positively associated with changes in the use of antidepressants in the municipalities between 1995 and 2010 however fewer elderly females used antidepressants in municipalities where the gini index increased in addition more young adults used antidepressants in municipalities where the number of those not being educated or trained had also increased an increase in the number of persons over 65 years of age living alone was positively associated with an increase in the use of antidepressants among elderly females

introduction the study of protest and social movements can no longer be encapsulated in the typical juxtaposition of the social scientific approaches utilized in north america and in western europe the term social movement has been bestowed with a remarkable variety of meanings in different academic disciplines and interdisciplinary settings while such analytical pluralism has long characterized the study of protest and contentious politics in this short contribution we suggest that the global economic uncertainties brought about by the 200708 financial crisis have triggered new waves of political mobilization which frequently defy easy categorization or explanation as a result there is considerable ambiguity as to the causes forms and effects of the new mobilizations in addition there are a number of contradictory developments that hint at the complexity of the field whilst it is true that we have seen a sudden wave of public anger and political protest in the aftermath of the financial crash culminating in 2011 as the year of the protester this has not led to a sustained challenge to neoliberal economics the new cycle of contention has been distinctive in its global and transnational dimension but it nonetheless remains shaped by national and subnational contexts despite electoral successes by new populist movements the centre of the political spectrum has rarely been ousted from power for long and where its tentative beginnings in icelands saucepan revolution culminated quickly in the uprisings across the arab world they have often been usurped by repression and counterrevolutionary forces there is then a sense that whilst business as usual persists below the surface there are a multitude of social agents eager to confront power and to make history it was the reemergence of the social actor in the new social movements of the 1960s that led alain touraine to argue that the way our cultural orientations find expression in collective action is the proper object of sociology social thought thus turns to the study of the historical agency of movements whenever there appear to be new social cleavages conflicts and confrontations viewed from this perspective it is no surprise that there has again been an explosion of academic publications on social movements and contentious politics in recent years this resurgence must also be examined within the context of changes that have occurred within the field of study over recent decades the study of social movements is now an established academic field with disciplines in the humanities and social sciences also experiencing a social movement turn there are established journals such as mobilization or social movements studies as well as newer outlets multiple special issues of the major journals devoted to social movements and theoretical concepts developed to define aspects of political contention have gained wide currency across the social sciences and humanities nonetheless the central conceptual questions of social movement research have not been resolved there persists significant disagreement amongst theorists in the field as to what the key features of a social movement are and therefore how to approach the study of protest and collective action while some have attempted to develop consensus definitions of social movements others have disagreed this is occurring at a time when western europe and north america are experiencing relative declines in the macrolevel and grand narrative explanations that underlay a substantial proportion of the academic work on the topic in their place there have been attempts to synthesize analytical tools within mesolevels of analysis such as bridging the gap between structure and culture or an expansion of isolated analytical tools to greater numbers of empirical cases with limited theoretical developments in this review of recent advances in social movement theory we distinguish between three broad levels of analysis micro meso and macro this is not to overstate the extent of their analytical separation there have long been noteworthy efforts to connect different perspectives and to bridge gaps between divergent theoretical and methodological approaches however continued challenges to the dominant paradigms as well as the pluralization of accounts of the most recent wave of protests necessitate that we renew our focus on the established concepts how in other words might we combine understandings that stress the crisis tendencies of global capitalism with those that focus on individual or local specificities for the purpose of our discussion the levels of analysis refer to the spatial scope that the theories address in their attempts to understand and explain the processes properties and predictors of social movements microlevel analysis refers to the examination of social movements with the unit and focus of analysis on social movement organizations and groups a mesolevel analysis places such a focus on a larger collection of actors that make several social movements within the boundaries of a state or a social issue this level of analysis spans a greater social space and places more complex institutions made up of a larger body of organizations and actors as the central unit of analysis theories dealing with mesolevel analysis are interested in the interactions between the state and social movements in the interactions between otherwise separate social movements finally macrolevel analysis looks at social movements from the perspective of largescale changes that expand beyond states and crossmovement interactions these changes are large enough in scope that they may produce changes to otherwise unrelated social movements and occur beyond the scope of any individual state crossnational generational patterns transnational economic and political changes and even relatively stable largescale or diffused processes such as capitalism patriarchy racism and xenophobia nationstates citizenship and neocolonialism however little work is generated that synthesizes understanding of social movements between micro meso and macrolevel analyses while some attempts to bridge analytical perspectives have worked to accomplish a synthesis they have often favoured one level of analysis over another instead a regional divide is present whereby north american approaches to the subject are often located within the microlevel or middlerange while western european investigations of social movements have been macro in focus but are increasingly favouring more empirical middlerange work we will argue that based on both the insights and oversights of contemporary social movement scholarship multilevel analysis is needed to expand our knowledge of contentious politics broadly and address the immediate questions posed by the relative novelty of the processes discussed above our starting point for this examination of recent theoretical contributions to the established literature is the notion that while democratic societies have witnessed a normalization of protest and that unconventional and extrainstitutional contention is part and parcel of the political landscape across political systems the post2008 situation has given rise nonetheless to movement mobilizations that are anything but normal instead they pose fundamental challenges to the economic and political orthodoxy of modern societies scholars have noted such shifts as they turned their attentions to the remarkable levels of participation in the spanish 15m demonstrations and the rapid proliferation of mediasavvy occupy encampments across the united states in 2011 for example along the way we have paid witness to anticorruption protests in brazil and russia a european antiausterity movement led by the greek resistance to euimposed austerity and reinvigorated youth and student activism from chile to quebec from the uk to iran the refugee crisis in europe and the mediterranean has been met with proand antimigrant activism and populist politicians of all persuasions have rattled the political establishment while aspects of recent waves of mobilization are novel we recognize that there have been continuities across a range of contentious processes nevertheless new challenges and questions are presented to us by what seems like a global wave of protest since 2008 we proceed with our investigation of the contemporary theoretical landscape of social movement studies by examining the state of the modern trinity of social movement theories that served as the basis of much of the north american social movement literature in the past decades namely the frameworks of resource mobilization political opportunities and framing we then explore macrolevel theories in the era of the newest social movements this review of the literature will allow us to specify how scholarship that bridges these levels of analysis will be better suited for the purpose of understanding the processes that have emerged in the global north since 2008 resource mobilization resource mobilization was originally a broad label for theories that contested older collective behaviour approaches which viewed social movements as relatively rare occurrences arising out of the structural strain of social change and increasing grievances among individuals however the framework became more focused on the study of the aggregation of resources as resources are necessary for engagement in social conflict this framework often promoted microlevel analysis as this aggregation led resource mobilization scholars to examine organizations while various accounts of the framework exist the entrepreneurial approach rooted in organisational studies of mccarthy and zald or the focus on contentious politics by tilly and tarrow for most movement organizations engage in strategic claimsmaking the communication of values and interests and a discussion of rational and often economicallyprivileged actors who belied the image of pathological deviants despite its early prominence in social movement studies resource mobilization has been one of the least developed in recent years however this is not because of a lack of relevance as studies are still utilizing components of resource mobilization theory in their analysis recent studies have continued to find resources including membership playing a positive role in for example union activity and obtaining news media coverage the latter study found that m ore resourceful organizations are better able to establish and maintain relationships with the news media and may also be better able to signal the legitimacy of the organization and its claims yet like other recent works that cover questions of resources neither of these studies discuss resource mobilization explicitly or seek to build on the framework theoretically instead other theoretical concepts such as social capital have been used to examine similar aspects of social movements much of the contemporary literature that does invoke resource mobilization merely adds empirical data across a range of cases to support some of the frameworks central claims the new wave of protests has the potential to challenge the stagnant state of the framework recent investigations into the use of information and communications technology within this new protest wave allows resource mobilization to integrate icts into its framework in novel ways as eltantawy and wiest found in their study of the 2011 egyptian revolution parallels could be drawn with occupy wall street a twitter movement where within a few months of the first encampment in new york citys zuccotti park there were hundreds of occupy groups on facebook liked by millions of individual user accounts twitter hashtags became a tool for the sharing of information and the tracking of conversations with up to 120000 related tweets on a typical day during the lifecycle of the occupations it is clear that successful mobilizations in the postcrash era have relied on sophisticated communication channels and social networks not all of which warrant the traditional emphasis on social movement organizations as repositories for the accumulation and concentration of … resources divorcing the use of resources from traditional conceptions of organization provides an opportunity to not only reinvigorate a framework that appears underutilized and underappreciated but also to stretch the level of analysis within which it is used beyond the microlevel political opportunity the analysis of political opportunity structures developed as a means of looking at social movements within broader sociopolitical contexts to see how those contexts constrained and moulded social movement actors organizations tactics and strategies early iterations of its use in understanding processes of contentious politics focused on structural accounts eisinger who was noted to be the first to use the term examined the responsiveness of local government bodies to residents claimsmaking and found that protests and responsiveness had a curvilinear relationship little signs of responsiveness led to little protest while significant levels of responsiveness preemptively dealt with concerns before protests would take place when local government was moderately responsive the city was more likely to experience protests because there were signs of hope for progress that was stalled this analysis was used to explain a wide range of social movement processes and was expanded to examine differences across nationstates one important contribution to the framework examined how political opportunity structures helped shape the types of mobilization commonly resorted to in a particular setting based on levels of openness regarding state input structures as well as output structures or the means by which the state could implement policy once a decision was made these contributions developed mesolevel analysis of social movements examining differences across state institutions at various levels they often branched out into research on single states or particular structures of those states they also began to explore political processes that were variable rather than structural and cultural or economic rather than political thus scholars in the field argued that the political opportunity perspective was becoming a sponge that soaks up virtually every aspect of the social movement environment with all variables being lumped together making the framework increasingly weak calls to differentiate concepts within the framework and to take a more constrained and cautious approach to applying it have resulted in the expansion of analytical scope into the areas of technological opportunity structure intellectual opportunity structures and mediation opportunity structures the structural and nonstructural lumping concern was also recently addressed by differentiating dynamic variables within the political realm from structural ones the cultural turn has also been analysed alongside the more structural approaches more recently with movement participants increasingly seen as active interpreters of these structures where otherwise a framework focused on mesolevel analysis the cultural turn could lead to further research within the political opportunity perspective to explore microlevel processes the framing perspective the framing perspective grew in popularity throughout the 1990s following a series of publications by david snow robert benford and associates since 2000 the framing perspective has been in the mainstream of social movement theory with the 1986 publication becoming one of the most widely cited articles in sociology the perspective following from goffmans work explores how social movements are active agents in the shaping of social movements through the location perception identification and labelling of problems solutions and incentives to participate in social movement activities this in part countered the overly structural aspects of the resource mobilization and political opportunity approaches while still maintaining a sociological examination of social movements framing largely loomed at the microlevel of analysis focusing on the collective action frames of organizations and movements recent studies typically viewed framing as an independent variable and examined how collective action frames affected political or economic outcomes and movement mobilization the bulk of these studies are empirical and seek to integrate framing with other theoretical approaches such as the analysis of emotions political opportunities and culture or within more pragmatic examinations of particular cases some recent research has led to theoretical contributions in the case of framing for example faupel and werums investigation of the womens movement in abeyance from the period 19101930 highlights the role of declining cultural and political opportunities to the increased use of individualist action frames in addition rather than finetuning framing theory some new contributions have sought to expand it halfmann and young make a theoretical contribution by exploring collective action framing not with regards to the content of messages but to aesthetic technique their focus is on the use of grotesque imagery with regards to social movement mobilization which they suggest may intensify the emotional impact and resonance of frames or break frames as pointed out by snow et al there is still ample room for advancing our understanding of the role of framing in social movements the literature still lacks significant comparative research and the processes involved in constructing adjusting and subverting collective action frames are still not widely studied however some advances have been made on some of these fronts for example with regard to the process of collective action frames brown argues that rather than being a highly open processes that actors engage in it is heavily structured by institutional contexts this work and others provide a renewed examination of framing from a structural perspectivetying framing back into political and national characteristics macrolevel analysis of the newest social movements mostly a feature of european debates on new left politics the term new social movements gained considerable traction within protest research in the 1980s advocates of the notion suggested that at least some features of contentious and countercultural politics in western europe from the 1960s onwards were new such as concerns with postmaterialist values and collective identity this newness which is perhaps overstated was suggested to have developed out of macrovariable changes such as large scale shifts in economics and international politics critics however pointed out that the break with the politics of old labour and trade unionism had been overstated much of the literature therefore acknowledged that the new social movements were more than an effect of the radicalism of youth and student groupings and an upwardly mobile workforce more than that they often manifested a deepening conflict between marginalized populations and their social control by state and market institutions with the end of the debate around the new social movements which were carried out as questions of structural social change large historicalstructural explanations have rarely featured in the mainstream of social movement research rather the discipline has settled largely on an instrumentaliststructuralist lens focused on microand mesolevel analysis on top of those listed above are other more recent theories that come through the cultural turn and largely focus on microlevel examinations of social movements for example those taking into account culture emotions or collective identity there is less focus on the question of structural strains or rational choices and instead a focus on how culture and emotions allow for strategy in movement fields however some of these insights continue to be challenged by accounts that build more upon the new social movement approaches especially post2008 some of which lie in the european tradition of macrostructural explanations with the new cycle of mobilization in europe research has been interested in explaining the unforeseen rise of new european movements such as the square protests by the indignados in spain the aganaktismenoi in greece or the iceland protests these the macrotheorists assert are part of a general crisis and outrage over the management of the crisis in europe and have been able to convert street anger into parliamentary gains two works are perhaps symptomatic of this return to theoretical macrolevel analyses that stress the importance of networks identity and grievances broadly defined in the face of growing inequality in western societies first castells notion of a network society suggests like other theories of globalization that new technologies and information flows create the preconditions for the embedding of local public spheres into a global network of actors that includes protest movements while technological development in this account is very much driven by information capitalism and therefore structured by inequalities of access it does nonetheless form the basis of new mobilizations and their exercise of communication power in the internet age the forms of communication employed for social actors also shapes their form of organization the more interactive and selfconfigurable communication is the less hierarchical is the organization and the more participatory is the movement second della portas recent work on antiausterity protest connects the new mobilizations directly to the question of social structure and political cleavages outlining what she calls the crisis of late neoliberalism della porta draws on several critical accounts of capitalist development such as hardt and negris conceptualization of empire and wallersteins world systems theory in her account protesters do not appear as individual actors driven by costbenefit analyses but as new class formations their social base is at least twofold on the one hand the deregulation liberalization and privatization of democratic societies results in the ineffectiveness of political institutions to respond to citizens demands and grievances leading to mobilizations outside the established channels of political engagement on the other hand the social base of contemporary protest is to be found in the precaritization of both middle and lower classes who build alliances on the back of their unmet expectations it is worth noting that renewed attention has been paid to critical social theory and marxism too work by cox and flesher fominaya has argued for the importance of reimagining the tradition of critical theory for understanding european social movements they point to the importance of reading the historical trajectories of european social movements as precursors to the alterglobalization protest cycle as well as the existence of transnational collective identities within these movements there are of course real question marks over the homogeneity of such movements given that they operate in a single market area which remains defined by diverging national characteristics and indeed a rise of nationalist perspectives on european integration work on alterglobalization activism has therefore stressed the diversity of viewpoints and methods of organizing and the difficulties of formulating coherent critiques of the neoliberal nationstate notwithstanding such challenges blokker has argued that despite their fragmented nature european social movements have in common a political critique of capitalism that opposes a depoliticization of market arrangements the idea of an other or alternative europe is a case in point contemporary protest and future research while we have outlined broad theoretical trends within the social movement literature the new wave of protest since the global financial crisis calls for a much more integrated examination to sum up this argument we now highlight some of the shared characteristics of contemporary mobilizations paying special attention to mobilization styles economic circumstances and the uses of information technology while the alterglobalization movement perceived the processes and problems of accelerated economic integration as part of a neoimperialist expansionary logic the global financial crisis of 200708 made the interconnectedness of the marketplace highly salient to a mass public nonetheless whereas the alterglobalization movement focused on mobilizing internationally to confront transnational corporate capitalism the most recent wave of protest was physically segregated at local regional and national levels whilst insisting on its references to global grievances we could see this taking place in the localized solidarity networks in greece and in the squares of egypt turkey spain the uk and the us we could also witness shared concerns across these movements with regard to austerity democracy and the crisis but we saw important variations that incorporated goals and processes specific to their settings this then raises questions regarding the diffusion of tactical knowledge as well as regarding claimsmaking at the national statelevel while recognizing the global contexts that have structured the onset of these new mobilizations their grievances and demands are both broadly generalizable across organizations jurisdictions and political borders and localized with regard to their specific internal and external circumstances in addition the economic nature of the crisis continues to produce differential fiscal consequences due to the new international division of labour for example the effects of the economic crisis negatively impacted oil prices meaning that oilproducing countries such as venezuela were significantly affected this has helped to foment protest against the leftist maduro government particularly within the middleand upperclasses who have seen a deterioration in their life standards and traditional entitlements such mobilizations are dissimilar to those in europe for example where many of the public protests signalled adherence to traditional leftwing political and economic ideas research on portuguese and brazilian protesters during this time also found that there were particular class aspects to the protests that reflected not only the particular economic positions the countries were in following the crisis but also the shifting class cleavages prior to the crisis that were results of the economys prior positioning and political make up aspects of interconnection between movements may also be a product of increased technological communication itself a partial byproduct of various economic and political contexts we would argue that the local level utilization of icts by movement actors cannot be discussed outside the context of mesoand macrolevel analysis without losing significant depth of understanding this raises a number of issues what is occurring across these levels that can help us understand the transmission of information between and within movements how are microand mesolevel factors positioning movements ict use relative to predictions made by macroanalyses some of these questions are already being addressed for example paolo gerbaudo writes about the macrolevel creation and proliferation of social networking tools such as twitter and the possibilities their structures provide but also clearly demonstrates the purposes for which they are used which are far more localized in sum the theoretical frameworks and concepts that have been developed by social movement scholars have not lost their relevance rather what we have argued here is that they need to be reconsidered in the light of the new mobilizations that have emerged in the aftermath of the global financial crisis of 200708 this new wave or cycle of protest is characterized by shared mobilization styles by their comparable responses to structural and economic conditions and by increasing communication across mobilizations and to better understand them integrated theoretical frameworks must be used to transcend the current narrow levels of analysis

the social movement literature in western europe and north america has oriented much of its theoretical work towards micro meso and macrolevel examinations of its subject of study but has rarely integrated these levels of analysis this review article broadly documents the leading theoretical perspectives on social movements while highlighting the contributions made in recent years with regard to the wave of protests across the globetypified by the occupy movement and the arab spring and grievances that are relatively novel in qualitative or quantitative form such as austerity precarity and a sense of democratic deficiency while these novel social processes have invigorated the specialized arena of social movement studies and generated a resurgence of work on social movements beyond the field we argue for the need to interconnect levels of analysis in order to develop a more insightful account of contemporary contentious politics

introduction according to sustainable development goal 31 the maternal mortality ratio is a global public health issue with approximately 287000 maternal deaths worldwide in 2020 and 418 occurring in least developed countries papua new guinea is the largest pacific small island developing state having one of the highest mmrs in the asiapacific region still faces significant obstacles in achieving sdg31 most png maternal deaths are caused by postpartum hemorrhage sepsis embolism and other complications resulting from pregnancy or delivery skilled birth attendants can effectively overcome problems during labor thereby considerably reducing maternal and neonatal mortality and contributing to the sdg31 and sdg32 goals however only half of women in png have sba during childbirth significantly lower than the average sba utilization in the western pacific region thus there is a need to explore possible pathways affecting sba utilization to improve maternal and child health prior studies have investigated supplyside challenges to sba consumption among png women such as recurring shortages of primary healthcare resources and ineffective or inefficient primary healthcare systems demandside barriers such as socioeconomic factors cultural factors and geographic factors also affect the demand access and utilization of sba among png women in addition gender inequality is one of the significant barriers to sba utilization among women in png that severely hinders the continued development of maternal and child health png is the most genderinequitable country globally with a gender inequity index ranking of 169170 in 2021 some studies indicated that gender inequality in png stems from the entrenched patriarchy in society and the perpetuation of genderbased subversive violence to sustain patriarchy and further gender inequality resulting in the low status of women and the denial of human rights and essential health services related global research and policy reports indicated that strategies to eliminate gender inequality must involve efforts to improve the status of women and empower them to create an enabling environment for women to protect their health within patriarchal systems womens status or social status is equivalent to womens recognized social position within a societys hierarchy profoundly influenced by socioeconomic cultural political and other structural contexts womens educational attainment is the most prevalent indicator of their social standing education facilitates womens understanding of their rights and maternal health services including utilizing sba improving womens education is essential for achieving public health in lowand middleincome countries womens empowerment is typically defined as the process by which those who have been denied the ability to make strategic life choices acquire such an ability extensive empirical research shows that womens status and empowerment in developing countries positively impact sba utilization however empirical research on the pacific is more limited than in regions such as asia and africa meanwhile the definition conceptualization and measurement of womens empowerment are often different and controversial in other studies due to each countrys various socioeconomic and cultural contexts and the fact that womens empowerment is a complex underlying structure whose internal causal processes are not yet transparent for example on the dimension of womens empowerment the most relevant studies applying demographic and health survey data included attitudes toward partner violence and household decisionmaking to measure the impact of womens empowerment on sba utilization some additionally incorporated elements like access to health services genderbased negotiation and social independence which may often be independently valid in different contexts were also considered moreover although the multidimensional structure of womens empowerment has received increasing attention in terms of measurement methods the majority of studies used summary measures or composite indices which make it difficult to comprehend the contribution of each item to the dimensions and to explain the direction and patterns of change in womens empowerment in addition few scholars have explored the mechanisms of action and potential pathways between the status of women empowerment and sba utilization based on factor analysis and structural equation modeling consequently the purpose of this study was to use a nationally representative dataset of png to apply exploratory factor analysis and confirmatory factor analysis to propose and validate potential structures of womens empowerment furthermore sem was used to assess and test the causal relationship between womens status empowerment and sba utilization and its effective mechanism of action to improve the practical experience for enhancing womens sba employment conceptual framework this study is based on a comprehensive conceptual framework of gender stratification theory to determine the social determinants of womens underuse of reproductive health services in png figure 1 depicts the advances in womens status as measured by education and feedback on womens empowerment which in turn increase womens adoption of the sba specifically the theory and framework emphasize that women with more power will have more freedom to act independently and have control over their lives the age of the first marriage mediates the path between education and sba use three potential agent dimensions refer to the predictive path proposed by shimamoto et al specifically a woman with a higher level of education tends to marry later has more decisionmaking power in the household has better access to health services and is better able to cope with domestic violence in empirical studies of womens empowerment employing dhs data these three potential proxy dimensions are utilized more frequently in contrast this study also considers the sociodemographic characteristics of women and families as potential confounders and whether women have received effective antenatal care services data sources this study employed crosssectional data from the 20162018 papua new guinea demographic and health survey to validate the association between womens status empowerment and sba use the png dhs is a national survey of png residents aged 1549 years in png one of its objectives is to give updated information on the current primary population and health indicators including maternal health womens empowerment and demographic characteristics sample design the png dhs used the 2011 png national population and housing census census units as the sampling frame the 22 provinces of png are divided into 43 sampling strata that distinguish between urban and rural differences with no rural sampling strata in the capital district each stratum was sampled using a twostage stratified sampling method to obtain the sample the first stage involved the selection of 800 cus using probabilities proportional to size technique the second stage used equal probability systematic sampling to select 24 households from each cluster resulting in a final sample of approximately 19200 households study participants and sample size the png dhs interviewed all eligible women aged in the family who were permanent residents of the family or visitors and had stayed at home the night before the survey 18175 women were identified for individual interviews of which 15198 completed the interview and the response rate was 84 the study sample was restricted to marriedcohabiting women who reported giving birth within the past 5 years as traditional empowerment indicators focus more on the marital context data on empowerment variables were collected only for marriedcohabiting women the sample of unmarried women was excluded giving a total of 5358 complete cases after excluding outliers and missing values data collection tools and techniques the png dhs collected data using three structured questionnaires household women and men the questionnaires were modified from the standard demographic and health survey phase 7 questionnaire to adequately represent png dhsrelated questions and were pretested by trained enumerators analysis strategies and measures this research implemented sem with latent variables which are composed of fundamental structural and measurement models in this study the measurement model defines the link between three latent variables and their respective observable variables the structural model section describes the associations between the above latent variables five endogenous variables and several exogenous variables are included caused by predicted pathways for the impact of womens status and multidimensional empowerment on sba use endogenous variables sba utilization during childbirth was used as a dichotomous variable based on the 20162018 png dhs final report 1 represented the use of sba during childbirth ie the respondent was assisted by a doctormidwifenurse trained village health volunteer at their last delivery and 0 represented sba was not used during childbirth ie the previous delivery was assisted by a village birth attendant family member friend or no one the dhs calculated age at first marriage as a continuous variable based on the centurymonth code between the respondents birth and first marriagecohabitation household decisionmaking was measured as a latent variable through three variables ie who decides on the following the respondents health care large household purchases and visits to familyrelatives these three variables were recoded as dichotomous with the jointrespondent decision alone being recoded as 1 and husbandpartnerother person decision alone as 0 as a latent variable attitudes toward partner violence were measured using five variables namely whether a respondent considered it to be justifiable for a wife to be beaten when she went out without permission neglected her children argued with her husband refused to have sex with her husband and burned food these five variables were recoded as dichotomous with respondents perception of injustice recoded as 1 and justice do not know as 0 access to health services was measured as a latent variable by three variables ie whether the respondent had difficulty in accessing health care in terms of the money needed for treatment the distance to the health facility the permission to visit the health facility and going to the health facility alone these four variables were recoded as dichotomous variables with respondents perceiving no difficulties being recoded as 1 and significant difficulties as 0 exogenous variables based on the availability of data and the findings of previous png studies 11 exogenous variables were included in this study of which womens education level was expressed as a continuous variable to reflect their highest years of education adequate antenatal care utilization was defined as a dichotomous variable according to the who indicating whether the maternal participation in four or more antenatal visits with 1 described as yes and 0 as no the remaining variables were sociodemographic characteristics of women and households and were considered covariates the sociodemographic characteristics of women included the following variables womens age parity and number of children alive which are included in the model as continuous variables work status is a dichotomous variable indicating whether women have been working in cash or kind for the last 12 months with 1 defined as employed and 0 as unemployedunpaid employment exposure to mass media is a dichotomous variable reflecting whether women have been exposed to at least one of reading newspapers watching television and listening to the radio with 1 defined as yes and 0 as no the sociodemographic characteristics of households include the following variables as a multicategorical variable the dhs constructed a composite index using principal components analysis based on the households consumer goods and housing characteristics this index forms the corresponding household wealth quintile which is defined as poorest poorer middle richer and richest from 0 to 4 respectively place of residence as a dichotomous variable defined as 1 for urban and 0 for rural region as a multicategorical variable defined as 03 for highland region islands region mormes region and southern region model analysis and steps the study analysis was divided into three steps first descriptive analyses were conducted using stata statistical software on the full sample where categorical variables were provided as percentages and standard errors whereas continuous variables were presented as means and standard errors second bartletts spherical and kaisermeyerolkin tests were performed using stata statistical software after the test results supported further factor analysis the sample was randomly halved using the splitsample command as recommended by relevant studies the data were then transferred to mplus statistical software where robust weighted least squares estimates were applied to the two samples for exploratory factor analysis and confirmatory factor analysis respectively the wlsmv estimation is appropriate for handling nonnormal and categorical data the efa section was applied with a geomin oblique rotation the number of retained domains was determined by the scree plot and kaisers criterion items with small factor loadings and crossloading were excluded and cronbachs alpha coefficient was used as a measure of internal consistency the cfa section validated the consistency of structure by the statistical significance of the model fit indices and unstandardized path coefficients with the model fit indices selected to be more applicable to large samples root mean square error of approximation for categorical data comparative fit indices standardized root mean square residuals and tuckerlewis index finally the wlsmv estimator linked to the probit function was applied in the mplus statistical software to estimate the model fit index the statistical significance of the standardized path coefficients the magnitude of the effect and its direction for sem sem can effectively control for measurement error to obtain estimates superior to those of regression analysis the bootstrapping product coefficient method with 500 draws was applied to test the significance of indirect effects mutual covariation between exogenous variables is recognized because of the probability of their correlation conversely mutual covariation between error terms of the assigned dimensions is enabled due to the possibility of correlation between unobserved components of the underlying structure the analyses utilized complicated sampling procedures to account for individual weights clusters and sampling strata to get nationally representative png data results descriptive analysis results according to the descriptive statistics in table 1 5782 of women used the sba during their last birth while 5142 participated in anc services four times or more regarding womens empowerment the mean scores of their family decisionmaking power and attitudes toward partner violence were in the upper middle range concerning the sociodemographic characteristics of women families the average age of women was 3004 years the average age at first marriagefirst cohabitation was 1955 years the average number of years of schooling was 540 years the average number of children was approximately 3 the majority of women were unemployed or unpaid and nearly half had exposure to mass media the majority of women lived in rural areas about two fifths were from the momase region and 2117 of womens households were in the poorest quintile efa and cfa analysis results the kaisermeyerolkin test result was 077 reflecting the applicability of the data to the factor analysis we split the sample randomly into two independent samples half of the sample was used for efa to explore potential structure and the other half was used for cfa to test the validity of the structure the results are as follows the efa section retained three factors based on the kaiser criterion and the scree plot which were rotated to identify three dimensions of womens empowerment attitudes toward partner violence household decisionmaking and access to health services explaining 7866 of the total variance the factor loadings for the threefactor structure ranged from 0690 to 0954 and the cronbachs alpha coefficient for each domain and overall ranged from 0739 to 0842 demonstrating good internal consistency the cfa section indicated the good structural validity of the measurement models based on the significance of the path coefficient and the model fit index mplus limited the path coefficient of the first metric to 1 and therefore did not calculate its statistical significance the degree of model fit was judged as follows rmsea ≤005 good fit ≤ 008 acceptable srmr ≤005 good fit ≤ 01 acceptable cfi tli ≥ 097 good fit ≥ 095 acceptable sem analysis results the results of the standardized sem analysis are shown in table 3 and figure 3 and the data fitted to the model indicate a good fit two empowerment variables household decisionmaking power and access to health services were positively associated with sba utilization during childbirth however the association among attitudes toward partner violence and sba utilization was statistically insignificant womens use of sba was positively associated with higher levels of education paid employment adequate use of antenatal services husbands primarysecondary education and higher levels of household wealth and negatively associated with higher parity and less prevalence in the highlands than the south age at first marriage was positively linked with higher levels of education older age adversely linked with higher parity and more living children it is lower for women in the highlands compared to the south and higher for women in the islands regarding womens empowerment attitudes toward partner violence are positively correlated with womens high levels of education and paid employment and negatively correlated with their husbands primarysecondary education women in the momase and highlands regions have more tolerant attitudes toward partner violence than women in the south region in addition household decisionmaking was positively associated with womens high level of education older age and husbands primarysecondary education however it was negatively associated with older age at first marriage and women living in the highlands had more household decisionmaking power than in the south access to health services was positively associated with womens high level of education older age paid work exposure to mass media higher level of household wealth living in the city husbands primarysecondary educationand negatively associated with older age at first marriage the bootstrap test results showed that womens education influenced sba consumption through multiple pathways with the standardized total indirect effect being significant but only the indirect effect pathway mediated by access to health services was significant accounting for 769 of the total standardized effect indicating the importance of access to health services in the influence of womens educational level on sba utilization discussion this study investigated the relationship and influential mechanisms among the status of women womens empowerment and sba utilization the model encompassing womens status empowerment and sba utilization in papua new guinea was validated through factor analysis the sem estimation results indicated that the status and empowerment of women in png have significant direct and indirect effects on sba utilization notably the impact of womens empowerment on sba utilization necessitates careful consideration of regional cultural and economic contexts drawing on established research and theoretical frameworks this study proposed the validated threefactor model of womens empowerment confirming the viability of employing multiple dimensions to measure womens empowerment at the individual level in png additionally the outcomes of the factor analysis endorse the adoption of a more extensive set of empowerment indicators facilitating a more comprehensive assessment of womens empowerment the study found a significant influence of education on the age at first marriage womens empowerment and sba utilization aligning with findings in related studies within developing countries improved education levels have the potential to prevent early marriage and detrimental marital predispositions however caution is warranted in exploring the connection between education and age at first marriage due to potential bidirectionality meanwhile education manifested a favorable impact on economic autonomy with higher educational attainment correlating with increased economic independence women endowed with economic autonomy experience heightened financial security and assertive participation in family decisionmaking thereby diminishing reliance on potentially abusive partners moreover education serves as a facilitator for maternal learning fostering awareness of appropriate maternal and child health services and rectifying improper practices and attitudes furthermore education is a positive factor in maternal learning raising awareness of appropriate maternal and child health services and correcting inappropriate practices and attitudes these findings underscore the pivotal role of education in advancing both womens empowerment and womens health the study also supported the robust correlation between the two dimensions of womens empowerment and sba utilization in png the extent of womens participation in household decisionmaking varies in different regions of png for instance womens livelihoods in chimbu and jiwaka are usually determined by their partners or male relatives advocating for womens participation in household decisionmaking may prevent women from losing autonomy over their health especially in poor households where spending on health services often constitutes a significant portion of the budget enhanced accessibility to health services mitigates womens constraints related to income geographical marginalization transportation barriers and safety concerns outside the home when seeking sba services this in turn contributes to reducing delays in womens utilization of sba these findings underscore the imperative for governments and policymakers to prioritize comprehensive womens empowerment and emphasize key dimensions to enhance womens empowerment and ensure womens health and wellbeing our investigation revealed a synergistic impact between education and womens empowerment on sba utilization increases in education and womens empowerment may contribute to accelerating womens utilization of sba correspondingly research from tanzania also showed that womens empowerment plays a moderating role between education and sba utilization but the dimensions at play are not the same this divergence may stem from the influence of contextual factors such as geography religion and culture on womens empowerment therefore the design of empowerment programs should be tailored to regional or national realities aiming to concurrently enhance womens empowerment eradicate gender inequality and ameliorate maternal health outcomes in png the effect of age at first marriage on sba utilization is not significant although partial evidence from developing countries and the social context within png enables the formulation of hypotheses the intricate nature of womens behavior in accessing health services particularly in resourcepoor settings implies that unobserved mediators may be present in the relationship between age at first marriage and sba utilization furthermore sem allows for a correlation between the residual terms of womens empowerment the sem results indicate the presence of interconnected unobserved components within the dimensions of womens empowerment necessitating additional research for elucidation as the first theoretically based study in png to examine the complex mechanisms of sba utilization in the context of womens status and empowerment at childbirth using nationally representative data it could serve as a standard and impetus for future research on similar topics in png and other pacific island countries simultaneously the application of sem provides this study with several advantages such as effectively controlling measurement error and allowing the examination of causal associations between variables however there are still some limitations to this study first the study samples representativeness and the results generalizability are more limited because unmarried women were not included second because the empowerment dimensions are limited to dhs data the womens empowerment studies cannot have all dimensions that may be examined third despite the advantages of sem in causal inference conclusion based on png dhs 20162018 crosssectional data this study validated the mechanism of action between womens status empowerment and sba utilization during childbirth the findings indicated the multidimensional nature of womens empowerment and validated the direct and indirect impacts of womens status and empowerment on using sba during childbirth this evidence suggests further empirical researchbased interventions in png and possibly psids to improve womens education household decisionmaking power and access to health services through a joint effort at the individual community and societal levels to promote womens sba utilization during childbirth to improve maternal and neonatal health and wellbeing in png and to achieve the sgd 31 target data availability statement the datasets generated and analyzed during this study are available in the dhs program repository this data can be found here dhsprogramcomdatadatasetpapuanewguineastandarddhs2017 cfmflag1 attitudes toward partner violence ethics statement the studies involving humans were approved by inner city fund international institutional review board the studies were conducted in accordance with the local legislation and institutional requirements the participants provided their written informed consent to participate in this study publishers note all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations or those of the publisher the editors and the reviewers any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher pathways

background skilled birth attendants sba facilitate identifying and overcoming labor problems and saving lives with one of the highest maternal death rates in the asiapacific area sba utilization during childbirth among papua new guinea png women remains low womens status and empowerment are important factors in maternal and child health services and critical to maternal and child health development this study is intended to apply structural equation modeling based on data from the demographic and health survey dhs to evaluate the causal relationship between womens status empowerment and sba utilization in png and the mechanisms of their influence methods this study employed data from the 20162018 papua new guinea demographic health survey png dhs which recruited 18175 women aged 1549 years a multistage sample and a structured questionnaire were used to collect information on maternal health womens empowerment and related topics stata 170 was used to describe the data while mplus 82 was employed for structural equation modeling and pathway analysisthe two empowerment dimensions of household decisionmaking standardized path coefficient β 0049 p 005 and access to health services β 0069 p 001 were positively associated with sba utilization while the association between attitudes toward partner violence and sba utilization was not statistically significant in addition mediation analysis revealed that education indirectly influenced sba utilization through access to health services β 0011 95 ci 0002 0022 the findings confirmed the direct and indirect effects of womens status and empowerment on sba utilization in png therefore a call for further evidencebased interventions in png and possibly pacific small island developing states psids is needed to improve womens educational attainment household decisionmaking and access to health services to enhance maternal and newborn health and wellbeing

despite growing availability of social resources to support informal caregivers the actual rate of service use by caregivers has remained relatively low according to the us department of health and human services and the administration on aging only 2 of identifi ed caregivers used caregiver support services in 2002 alzheimer s association and national alliance for caregiving found that only 9 used respite services and only 11 participated in support groups although many studies have investigated determinants of caregiver service use most fail to do a systematic review of the whole picture of service utilization by focusing on a single or a limited number of services thus interrelations among caregivers concurrent service utilization have been overlooked which may result in an incomplete assessment of comprehensive services used by an individual using a certain service may be associated with an increase or decrease in another service use and depending on the type of service needs individual s use of combinations of diverse services may vary as a complete service use assessment classifying overall patterns of service use based on interrelations among separate utilization may contribute to a better understanding of how caregivers choose particular or diverse services and may lead to more effi cient distributions of resources for caregivers some studies attempt to shift away from the individualistic focus on service needs toward a processoriented understanding of dynamic pathways of caregivers helpseeking processes as a gateway leading to service use more recent studies have elaborated caregiver s network compositions specifi cally the network episode model offers an advanced theoretical approach that integrates a processoriented caregiver career perspective into a multidimensional contingency model to address the previously limited scope of clinical service needs this study emphasizes the effect of caregiver s network compositions on service use patterns as integrated combinations of formal and informal support for caregivers using a national sample of informal caregivers caring for disabled older adults living in communities this study aims to classify overall service use patterns of caregivers and to identify determinants associated with these empirical patterns understanding the service use patterns may be informative to service planning and case management for caregivers and may suggest ways to enhance caregiver support systems by identifying inhibitors or facilitators of service use conceptual framework the andersen model is the most widely used analytic framework in comprehensive service use research with three domains predisposing propensities to use services enabling factors that encompass an individual s ability to secure services and need factors that refl ect the nature and severity of frailty the andersen model has extended to incorporate formal and informal care systems by emphasizing the dyad of analysis units on caregiving research bass and noelker expanded the model by incorporating caregivers properties in addition to familyrelated enabling resources furthermore mitchell and krout found that the andersen model is even better suited to predicting communitybased discretionary service use than nondiscretionary health service use although many studies have identifi ed idiosyncratic determinants of service use in caregiving contexts their fi ndings were limited focusing on fragmented service utilization even if diverse service uses were considered some studies simply aggregated total numbers of services used by caregivers however we cannot always guarantee that multiple service uses are the best even if a caregiver does not have a certain service need overuse of services must be taken into account as much as underuse of services recognizing these limitations some studies have suggested a complete assessment of comprehensive service uses regarding such a measurement issue certain studies have conceptually classifi ed service use patterns yet the lack of empirical basis among these typologies may oversimplify or undersimplify service use patterns in reality despite various ways to measure service use there is no consensus on how to best measure complex service uses patterns of service use depend on helpseekers social contacts and available informal resources the nem elucidates individual pathways to streamline a comprehensive picture of service utilization by highlighting two points examining overall patterns or combinations of multiple service uses and reformulating how the availability of care networks infl uences these patterns in addition recent studies revealed signifi cant associations between various service uses although assistance from personal care does not encourage the disabled older adult to function more independently using assistive devices or home modifi cations can allow the disabled to perform more independently such associations among multiple service uses are more meaningful to understand the entire service use mechanism thus this study postulates that caregivers choose different helpseeking pathways depending on available resources from their social networks and analyzes overall patterns based on the full assessment of multiple services used by caregivers in explaining determinants of service utilization many studies have pointed out the importance of service needs in service utilization using a national sample of disabled older adults and their family caregivers miller and mcfall found that care recipients with higher levels of clinical needs such as functional limitation or disability are more likely to use services another study identifi ed care recipients cognitive impairment as a signifi cant contributor to increases in service use with respect to caregiverrelated service needs caregiver burden was commonly found to be one of the most important determinants of service use these fi ndings have been informative to specify eligibilities and reimbursements of communitybased longterm care services for frail older adults and their caregivers more recent studies highlighted the importance of dynamic networks of caregivers by reconsidering mutable conditions to secure services of three domains in the andersen model enabling factors have extended from individual resources to family or community resources as the necessary means to facilitate services focusing on the diversity of individual pathways to formal help the nem shifts the focus from individual choice to socially constructed overall patterns of service use through social networking it also considers the central role of social network s structure and content in infl uencing pathways used by helpseekers the elaboration of empirical elements of network formation can contribute to a deeper understanding of caregivers helpseeking behaviors related to service use empirical studies have examined what mechanisms of informal caregiving encourage the establishment of supportive ties with formal service use considering a comprehensive array of services toseland and colleagues concluded that enabling factors are more decisive than need or predisposing factors specifi cally lower levels of caregiver informal support were associated with an increase in service utilization considering that respective role obligation of caregivers varies by family relationship with the care recipient kosloski and montgomery found that spousal caregivers are more likely to receive outside assistance than adult children caregivers cavaye found that separate resident caregivers are more likely to use personal care homemaker and therapy services whereas coresident caregivers use more assistive equipment as accommodative resources another recent study concentrates on the roles of family cohesion and informal support on service use the current study compiles these empirical elements of social network composition in summary this study structures caregivers service use patterns by personcentered clustering this clustering classifi es similarities in individual service use it also combines the nem s ability to determine caregiver s network compositions with the enabling domain of the andersen model this examination of determinants of service use patterns may discover barriers to service use and inform the creation of support systems for caregivers in need methods data source using the 2004 national longterm care survey and its supplemental informal caregiver survey this study analyzed nationally representative medicare benefi ciaries aged 65 years or older with chronic disabilities living in the community and their primary informal caregivers excluding 14 paid primary caregivers 1908 dyads of community older adults with any limitations in activities of daily living and instrumental activities of daily living of at least 3 months of duration and their primary informal caregivers were included the sample design of the nltcs data consists of the longitudinal sample design that has been collected since 1982 and two crosssectional cohorts from an agedin sample who became 65 years old between 1999 and 2004 and survived to 2004 to correct the sampling errors from this complex sampling design this study used the survey analysis procedure dealing with clustering stratifi cation and weighting in addition to the balanced repeated resampling technique with regard to missing information less than 10 of the observations had missing values with the exception of caregivers coresidence family income and age and care recipients cognitive impairment where 15 33 had missing values to reduce bias from the uncertainty of missingness this study used multiple imputation by chained equations which loop through all missing values of incomplete data from each conditional density of a variable given all other variables it was implemented via ice procedure in stata 100 software measurement service use of caregivers guided by the nem s rationale for measuring patterns of service use this study assessed the full range of formal services that offer support to informal caregivers the caregivers reported their use of all such services but not those provided by their informal networks such as family friends and relatives some states consider a wide range of caregiver support programs as part of homeand communitybased programs for frail older adults whereas others view caregiver support as a distinctive program and explicitly recognize informal caregivers therefore to assess the full range of care services that support informal caregivers directly and indirectly this study included three services that offer direct help to caregivers and seven longterm care services that offer indirect help to caregivers by directly supporting the care recipients to further understand how separate service uses are interrelated this study classifi ed overall service use patterns using the latent class analysis predisposing factors these factors are preexisting attributes that identify the propensity of a caregiver to use services table 1 presents operationalization of the variables guided by the andersen model care recipient and caregiver sociodemographics and caregiver employment status were categorized care recipient residential area was divided into rural and urban area enabling factors the enabling factors included care recipient fi nancial resources and caregiver capacity affordability of care and network compositions all enabling factors except caregiving capacity were categorical single measures caregiving capacity was measured with four items whether caregivers experienced uncomfortable feelings bad emotions lifting or moving diffi culty and insuffi cient medical care knowledge while providing care its summative score was generated with an acceptable reliability under the enabling domain the nem offers a rationale to elaborate specifi c elements of a caregiver s network composition in light of caregivers social contacts and availability of resources in the network the comprehensive network compositions including family relationships numbers of informal caregivers coresidence with care recipient social support and family cooperation were measured for social support the extent to which caregivers perceived trust spiritual and emotional support or confi dence from friends or relatives was captured by summing these eight items with likerttype scales to measure how much other family members cooperated with the primary caregiver eight items with 4point scales were aggregated with a high reliability whether family members spent enough time in caregiving shared care responsibility showed enough respect and patience for care recipients and visited or telephoned them gave enough help and appreciation for a caregiver and did not give unwanted advice to the caregiver total number of available informal caregivers was counted and two other measures were measured in the categorical form of single item need factors diverse service needs refl ect the motivating reason for a caregiver to seek service this study considered both care recipientand caregiverrelated needs care recipients clinical needs were measured with medical comorbidity functional dependency cognitive impairment and problem behaviors specifi cally cognitive impairment was assessed through the short portable mental status questionnaire problem behaviors were summed by 15 problematic behaviors caregiverrelated needs included caregiving performance selfrated health physical functioning burden and time privacy restrictions caregiving tasks were measured by assistance in adls and iadls in addition caregivers were asked how long and how many hours per week they provided care caregiver burden was measured using three single items with a likerttype scale physical emotional and fi nancial burden which were summed based on a reliable internal consistency for time privacy restrictions caregivers reported whether they had less time with other family members than before and whether they had to give up vacations hobbies or their own activities due to caregiving which were summed based on a reliable internal consistency statistical analytic plan latent class analysis to classify homogeneous subgroups of caregivers based on 10 dichotomous service use measures an lca was enumerated this technique overcomes limitations from simple crosstabulations and traditional variablecentered analyses in that it can extract parsimonious and meaningful personcentered conceptualization by focusing on relationships among individual participants that is the lca groups individual caregivers into certain categories based on similarities in caregivers service use which can help a researcher to conceptualize certain patterns of caregiver service use the lca provides two sets of parameters latent class probabilities refer to the number of classes and the relative sizes of those classes and conditional probabilities represent the probabilities of an individual in a certain class of the latent variable therefore within each of the latent classes of caregiver service use patterns the caregivers have a specifi c probability of being at a given level of the observable service utilization to determine an optimal class solution with the exploratory lca each of the models was estimated by stepwise addition of classes until the model fi t the data properly along with visual representations of patterns the stability of each model was examined using different sets of starting values based on a local maximum in iteration processes in this process the smallest scores of akaike s information criterion and bayesian information criterion are preferred as a goodness of fi t as a measure of how well the classes can be distinguished entropy s higher score is selected indicating the best model classifi cation the vuonglomendellrubin test assesses whether the right number of classes is chosen comparing the model with k classes to a model with k 1 classes due to the complex sampling of the nltcs the lca dealt with sampling weights with a robust variance maximum likelihood ratio estimator via mplus 30 to create a single latent variable with a set of underlying classes these classes defi ned as caregiver service use patterns were considered as a nominal outcome measure in the fi nal analytic model multinomial logistic regression and robust variance estimator to determine predictors associated with these service use patterns estimated by the lca a multinomial logistic regression was performed through svymlogit procedure in stata 10 dealing with base weights primary sampling unit and poststratifi cation this survey procedure can provide accuracy of estimates and correct possible sampling errors from the differences between the complex nltcs study design and the simple random sampling using the brr replication method as a robust and fl exible replicate resampling technique this study estimated more accurate parameters and standard errors through a survey analysis process through multicollinearity tests care recipients race was dropped in this fi nal analysis because of a high collinearity with caregivers race results sample characteristics as shown in table 1 the study sample consisted of care recipients aged 65 107 years and their primary caregivers aged 15 97 years around 35 of care recipients and their caregivers were males care recipients were less likely to be married compared with caregivers both the care recipients and the caregivers were primarily caucasians despite high levels of education nearly one quarter of the care recipients earned an annual household income of less than 25000 about 78 of the caregivers received education greater than high school but only 34 were currently employed care recipients were almost evenly split by residential area on average the caregivers provided six caregiving tasks for 26 hrweek fairly large numbers of caregivers had performed caregiving for more than 10 years separate service use and hierarchical structure of service use patterns as shown in table 2 the caregivers used an average of 17 services of 10 services assistive device service was the most widely used the least frequently used service was day care or senior center service support group and respite service were used less than 10 using this information about separate service use we estimated overall service use patterns classifi ed by interrelated associations among respective service uses all classifi cations among the twothrough fi veclass solutions showed a consistent hierarchy across concurrent service uses the theoretical fi ts of each model were examined via visual depictions figure 1 illustrates the overall pattern of the threeclass solution service users were classifi ed as light service users selective inhome service users and multiple service users the overall patterns of service use were fairly hierarchical in terms of conditional probabilities of using respective services of the hypothesized 10 services eight services except for daycare or senior center service and support group service contributed to distinguishing apparent patterns in service utilization light service users showed consistently lower probabilities across all 10 services compared with the other two classes several services were more prevalently used within this class compared with other services assistive device housework service home modifi cation and personal or nursing care service selective inhome service users were characterized with much higher probabilities of assistive device home modifi cation and personal or nursing care use compared with light service users in fact selective inhome service users showed the highest conditional probabilities of using assistive device service across three classes and used more home modifi cation services than other services multiple service users had the highest conditional probability of using all services except assistive device services among three classes multiple service users mostly used assistive devices and personal or nursing care although they least used support group services and daycare or senior center services in sum although the utilization rate of light service users remained low across all services selective inhome service users and multiple service users showed large variations in the use of particular services with multiple service users using consistently more services than selective inhome service users in particular there were noticeable differences in personal or nursing care home modifi cation and assistive device services among the three groups predictors of service use patterns to further understand overall patterns of caregiver service use this study investigated determinants of these patterns using a multinomial logistic regression under the survey analysis procedure with the brr resampling method compared with light service users multiple service users care recipients were more likely to be older to live in a rural area and to have private insurance and medicaid and higher levels of family income and service needs in addition multiple service users were more likely to be african american educated and employed and to provide more diverse care tasks also multiple service users were more capable in providing care caregiver s network compositions signifi cantly determined service use patterns multiple service users were more likely to be spouses compared with other caregivers had higher levels of social support and family cooperation over caregiving and had fewer alternative caregivers nevertheless they were more likely to report higher caregiver burden and time restrictions in their spare time compared with light service users the care recipients of selective inhome service users were older and more likely to have private insurance and higher levels of clinical needs selective inhome service users were more likely to be caucasian highly educated and adult children caregivers in particular higher levels of social support were associated with the probability of being selective inhome service users these caregivers performed more diverse caregiving tasks than light service users but there was no difference in caregiver burden or time restriction replacing light service users as a reference group multiple service users were compared with selective inhome service users multiple service users care recipients were more likely to live in rural area and to have medicaid no signifi cant difference was found in care recipients clinical needs between multiple and selective inhome service users multiple service caregivers were more likely to be african american and reported better caregiving capacity and higher levels of physical functioning in caregivers network composition and caregiving performance there was no difference between multiple and selective inhome service users discussion this study supports the hypothesis that classifying overall patterns based on comprehensive service use can be a valid measure of service use and preferable to the more commonly used aggregated measures this study broadens knowledge about the empirical classifi cation of service utilization through the personcentered analytic technique this typology process offered the advantage of grouping homogeneous caregivers by structuring combinations between separate service uses this study found large variation in using certain inhome services to assist informal caregivers specifi cally assistive devices house modifi cations and personal or nursing care were more prevalently used by the caregivers and showed hierarchical distinctions among three classes of them distinctive services with the explicit identifi cation of informal caregivers were rarely used the growth and utilization of specialized services for caregivers should be noted when developing caregiver support systems showing higher levels of heavy care tasks and burden multiple service users cared for physically more dependent care recipients this fi nding implies a necessity of more synthesized and systematic routes to facilitate accessibility of comprehensive services for these caregivers dealing with high care demands indeed navigating the fragmented longterm care system is a challenge for most caregivers especially for multiple service users policymakers need to revisit service delivery systems and consider using a single entry point system for caregivers to easily access information about services and be seamlessly referred from one agency to another some states are already implementing this linkage with sep and future research needs to examine its effectiveness and effi ciency using assistive devices and modifying the physical environment of the house may be effi cient ways to assist in certain daily tasks by enhancing the physical independence of care recipients selective inhome service users showed highly skewed service use patterns with heavy dependence on use of assistive devices and home modifi cation comparing with multiple service users these caregivers also reported lower probability of using personal or nursing care similar to the study by hoenig and colleagues this may refl ect interesting dynamics underlying respective service utilization a signifi cant association between use of assistive technology and use of personal care has been considered as an adjustment of care recipients care needs and a reduction of personal care tasks these results may recall our attention to caregivers convenience in physical environments this study demonstrates that day care or respite services were rarely used by caregivers although respite services assist caregivers to limit their time by temporarily replacing caregivers roles liu manton and aragon reported that these respite services were rarely accessible to caregivers furthermore a more recent study concluded that actual service utilization is relatively low compared with the high need of caregivers still caregivers reported that they do suspect whether home helpers are well trained and reliable and mostly guard their privacy public awareness efforts that disseminate service information remain critical through a combination of the andersen model with the nem this study highlighted that diverse caregiving network compositions signify distinctive service use patterns of caregivers understanding the function of family relationships social support and number of alternative caregivers elaborates how each component of a caregiver s social network may function independently or differently as posited by other research spousal caregivers used more services than other caregivers which may suggest that emotional attachment and caregiving willingness are linked to a caregiver s role obligation adult children caregivers might have higher probabilities of being selective inhome service users showing heavy dependence on use of assistive devices and home modifi cation which might indicate more knowledge of technology than other caregivers as expected having more informal caregivers reduced service use but higher levels of social support encouraged caregivers to use services because assistance from alternative caregivers may relieve care tasks formal service use may decrease as a result however the role of social support may be more complicated through social support caregivers can not only receive actual instrumental assistance but also acquire information about services measuring caregivers perception of social support may mean that caregivers acquire more service knowledge than actual instrumental assistance future research should examine how instrumental and emotional supports function differently in using services the positive association of family cooperation with service use may suggest an extension of family education beyond individual caregiver education in that caregivers family members can facilitate use of services more easily within a cooperative family system that is these network compositions elaborated by the nem may function as a referral or gatekeeping route in selecting needed services medicaid and private insurance functioned as signifi cant facilitators to promote service utilization although wealthy older adults can purchase services directly the very poor qualify for fi nancial assistance consistently li found that medicaid s effect on the vulnerability of families with incomes just above the poverty line was a signifi cant predictor of barriers to accessing homemaker services or home modifi cation services in addition to medicaid homeand communitybased service waiver programs many agencies are defi ning medicaid recipients or lowincome people as their priorities that is medicaid may create a nonlinear relationship between enabling factors and service use in terms of low accessibility and affordability this result raises caution about middleincome caregivers who did not meet medicaid eligibility and who could not afford caregiver support services without private longterm care plans as to be expected from previous research using a dyad of care recipients and their caregivers caregiverand care receiver related needs were found to be consistent contributors to the likelihood of service use caregivers who experienced higher levels of burden and more time restrictions were more likely to solicit formal services zarit and leitsch emphasized that caregivers need to be trained to recognize their limits and health status such training enables caregivers to provide more stable care by encouraging them to actively seek support however a disturbing proportion of caregivers received no instruction for care tasks training and service information this study also found some meaningful associations of predisposing factors with caregivers service use patterns in particular african american caregivers showed higher likelihood of selecting multiple services than caucasians the role of race in the differentiation of service use patterns needs to be recognized when testing potential moderating effects on african american caregivers service selection process from a methodological perspective additional constructs relevant to service use barriers beyond individuallevel predictors should be developed by employing multilevel modeling for exploring connections between macrolevel and microlevel of determinants of caregiver service use as indicated by the fca report current local agencies have large variations in implementing caregiver support programs the infl uence from macrolevel factors on service use may lead to endogeneity bias where an independent variable is directly linked with a dependent variable in addition in its use of crosssectional data the study fi ndings are limited in application to the caregiving context in which service needs may vary over the course of the caregiving experience understanding the trajectories of service predictors and service utilization across the span of the caregiving experience may indicate more precise explanations of what leads to service use despite a diversity of caregiver support services aimed at enhancing caregivers abilities many caregivers either fail to use such services at all or use them late in their caregiving careers accordingly the intended effect of the service is greatly diminished to establish a more effective service system that can implement early interventions specialized for the target population s needs caregiving research needs to accumulate evidence regarding determinants of caregivers service utilization knowledge of these inhibitors and facilitators would offer a complete picture of certain caregiving situations and could inform caregiving policies and practical guidelines for better caregiver support systems

the article seeks to identify patterns of service utilization among informal caregivers of frail older adults in particular the study examined determinants that explain heterogeneous variations in caregivers service use patterns methods using a latent class analysis lca on the 2004 national longterm care survey and informal caregiver data n 1908 this study classifi es overall patterns of caregiver service utilization fi nancial information support group respite service day care or senior center personal or nursing care housework meal delivery transportation house modifi cation and assistive devices with an emphasis on caregivers service use patterns and social network derived from the network episode model the modifi ed andersen model guides determinants of these patternsthe lca classifi ed a hierarchical structure of service use patterns multiple service users selective inhome service users and light service users caregivers network compositions signifi ed heterogeneity in service use patterns care recipientand caregiverrelated needs contributed to distinguishing service use patterns implications differentiation of services may be important for meeting caregivers needs and distributing program resources by identifying target populations for intervention this typology process may tailor specifi c interventions to better support caregivers

introduction in daily life cognition is not always related to events currently occurring it can arise independently of concurrent perceptual input and any external task being performed evidence shows that people spend up to half of their waking time engaged in thoughts that are only loosely tied to their current activity such selfgenerated mental activity often called daydreaming can help individuals absorbed in it feel happy and calm and may be used as a coping mechanism to handle the frustrations of daily living despite these benefits existing literature suggests that engagement in daydreaming may be detrimental to wellbeing for example daydreaming has been associated with higher levels of anxiety and depression daily unhappiness and poor sleep quality furthermore excessive daydreaming is considered maladaptive daydreaming which is associated with shame and dissociation attention deficit hyperactivity disorder anxiety disorders depressive disorders and obsessivecompulsive and related disorders however daydreaming is not experienced homogenously consequences of daydreaming may depend on the specific features of imagination patterns one important and major content of daydreaming involves other people which has recently been conceptualized as social daydreaming this study aims to offer novel insights into the emerging field of social daydreaming social daydreaming and general daydreaming when daydreaming individuals spend a significant amount of time thinking about others one fundamental human motive is the desire to form and maintain social connections because daydreaming typically reflects engagement with personal goals it is associated with the pursuit of social connections therefore it plays an important role regarding social wellbeing we define general daydreaming as daydreaming that includes all kinds of content and social daydreaming as daydreaming that only includes social content preliminary evidence suggests that unlike general daydreaming social daydreaming may have an adaptive value for daily social life a crosssectional study revealed that a higher propensity for daydreaming about significant others was related to higher life satisfaction a oneday experience sampling study showed that everyday social daydreaming but not nonsocial daydreaming was associated with increased happiness and feelings of connection additionally a 4week longitudinal study demonstrated that positivevalence social daydreaming predicted a reduction in loneliness during the transition to university given the different functionalities of social daydreaming these findings highlight the importance of capturing it as a construct separate from general daydreaming however it remains unclear whether social daydreaming has adaptive value within a specific context theoretically daydreaming about another person may facilitate the pursuit and attainment of meaningful social goals eg maintaining a positive relationship with that person therefore it is important to identify who participants daydream about and whether this propensity is connected to the relationship quality with that person nevertheless previous studies did not specify a target of social daydreaming during assessment or capture the relationship quality with a specific other as a correlate of social daydreaming moreover given that these studies captured the change in adjustments in a maximum of 4 weeks further longterm research is necessary to fill this gap we focus on a marital partner as a target of social daydreaming and examine how it is associated with marital relationship quality through a 1year longitudinal study marital partners play an important role in an individuals wellbeing therefore focusing on the propensity for daydreaming of the marital partner as a separate construct from general daydreaming will offer important empirical evidence to deepen the understanding of its interpersonal functionality attachment style as a potential moderator of the relationships between social daydreaming and marital relationship quality although previous research has generally found positive aspects of social daydreaming poerio and smallwood stressed that social daydreaming per se was not inherently adaptive or maladaptive rather according to the context regulation hypothesis of daydreaming adaptiveness depends on the content of thought therefore a third factor which could influence the characteristics of daydreams would moderate the relationship between daydreaming about marital partners and marital relationship quality attachment style is known to influence how people daydream about their marital partners in their daily lives this construct reflects how individuals build mental representations of themselves and significant others based on their interpersonal experiences although the original attachment theory addresses early relationships between children and caregivers it could serve as the basis for the theory of romantic relationships among the different attachment styles individuals with secure attachment to their partner describe love experiences as friendly happy and trusting contrastingly there are two types of insecure attachment to partners anxious and avoidant 1 although their detailed features are different 2 both types of attachments are characterized by a negatively valanced internal working model positively and negatively valanced repetitive thoughts are associated with good and poor adjustment respectively recent studies have reported differences in daydreaming experience across attachment styles individuals who experienced frequent maladaptive daydreaming tended to show high anxiety while individuals who experienced normal daydreaming tended to have secure attachment styles the relationship between attachment style and problematic social media use was significantly mediated by maladaptive daydreaming in high anxietyrelated styles but not in the secure style these results indicate that individuals with an insecure attachment style show a greater 1 although existing literature using four attachment styles is prevalent some previous studies have identified three clusters consisting of secure anxious and avoidant styles from empirical data considering this inconsistency we explored the number of attachment styles based on the empirical data following the statistical procedure used in a study by brennan et al detailed in the method section three styles were identified from the current data and used in this study as indicated by the results this point will be discussed in the section discussion 2 anxious attachment is linked to a fear of interpersonal rejection excessive need for approval from others and distress when ones partner is unavailable or unresponsive whereas avoidant attachment is linked to a fear of dependence and interpersonal intimacy excessive need for selfreliance and reluctance to selfdisclose negative association between daydreaming about their marital partner and subsequent marital relationship quality whereas individuals with a secure attachment style show a greater positive association between them the present study we examined how the propensity for daydreaming of a marital partner was associated with marital relationship quality over 1 year via a threewave longitudinal study following an emerging body of research on social daydreaming we conceptualized the propensity for daydreaming about the marital partner as a separate construct from the propensity for general daydreaming we modified an existing daydreaming measure by emphasizing that the target was an individuals marital partner we expected to find two separate but related factors when we jointly analyzed the existing measure of general daydreaming and modified measures of social daydreaming moreover given that social daydreaming generally has adaptive value for daily social lives we hypothesized that the daydreaming of marital partners would be positively associated with subsequent marital relationship quality we also hypothesized that attachment style would moderate this association individuals with a secure attachment style would show a greater positive association between daydreaming about their marital partner and subsequent marital relationship quality whereas individuals with an insecure attachment style would show a greater negative association between them because gender and marital duration are related to marital relationship quality we used them as control variables materials and methods participants and procedure all participants were japanese and married and were recruited by an online survey company 3 the survey was conducted in japanese the data supporting the findings of this study are available upon request from the corresponding author the surveys were conducted in january 2016 july 2016 and january 2017 to increase the quality of the data the online survey company screened participants who failed to correctly answer at least one of the two screening questions at time 1 thus we obtained data only from participants who answered these questions correctly at time 1 327 participants completed the study at times 2 and 3 251 participants and 215 participants respectively completed all questionnaires participants provided personal information at time 1 at each time point the participants completed a set of 3 questionnaires as detailed below they also completed several individual difference measures unrelated to the current research question the study procedure was approved by the ethics committee of a university in japan the sample size was determined a priori by considering similar prior studies and budget constraints the required sample size to detect misfit was satisfied corresponding to root mean square error of approximation 008 involving df 15 with a power of 95 on α 005 this power analysis was followed by moshagen and erdfelder procedure and conducted using the sempower 110 package measures propensity for general and partnerrelated daydreaming general daydreaming was assessed using the daydream frequency scale which composes the imaginal process inventory it consists of 12 items and measures the frequency of general daydreams in daily life previous research has validated the japanese version of the ddfs in addition we slightly modified the ddfs to measure the propensity for partnerrelated daydreaming by simply adding the phrase about your partner after the word daydreaming in the instruction and items of the ddfs both scales were answered on a 5point scale marital relationship quality the subjective quality of marital relationships was measured using the investment model scale it measures commitment satisfaction investment size and quality of alternative relationships which enabled us to explore the effect of daydreaming on various factors associated with marital relationship quality the items were answered on a 7point scale the japanese version of the ims was validated in a previous study attachment style attachment style was measured using the experiences in close relationship scaleshort form which consists of 12 items answered on a 7point scale it measures two attachment dimensions anxiety and avoidance the original items were translated into japanese by the authors and consistency was checked via backtranslation 4 statistical analysis all analyses were conducted with r 403 and mplus 83 via the mplusautomation 08 package as in most longitudinal studies data resulting from participant attrition were missing thus we compared participants who remained in the study and those who dropped out using littles missing completely at random test with the bayloredpsych 05 package we obtained a nonsignificant χ 2 value for this test 4779 p 0249 suggesting that missing values in the dataset were completely missing at random and could be reliably estimated therefore we applied the full information maximum likelihood method to structural equation modeling to address missing data factor analyses of daydreaming scales to investigate whether partnerrelated and general daydreaming can be regarded as separate factors we first conducted crosssectional factor analyses on the data from each time point separately following a recent recommendation for factor analyses we first conducted a parallel analysis using minimum rank factor analysis with the efamrfa 109 package to initially assess the number of factors we then conducted exploratory factor analyses using promax rotation with the psych 209 package longitudinal measurement invariance we examined the longitudinal measurement invariance for daydreaming and investment scales we tested a series of four models with increasing invariance for each subscale configural invariance weak factorial invariance strong factorial invariance and strict factorial invariance to identify the same latent construct longitudinally a strong or strict factorial invariance must hold across measurement times to evaluate the invariance between successive models we investigated the changes in the comparative fit index because the chisquare difference test is sensitive to large samples we followed the rule of thumb of cheung and rensvold that a cfi decrease ≤ 001 indicates an invariant model fit all models were estimated using robust full information maximum likelihood to accommodate nonnormality residual correlations between identical items over time were freely estimated to account for the nonindependence of uniqueness over time 4 descriptive statistics we report the means and standard deviations of each variable moreover we evaluated internal consistency using mcdonalds total omega coefficient with the psych 209 package this coefficient is superior to cronbachs alpha in evaluating a scales internal consistency crosslagged panel models our main interest was betweenperson effects rather than withinperson effects therefore we analyzed the longitudinal relationships between daydreaming and marital relationship quality using crosslagged panel models following the recommendations of orth et al we tested bidirectional relationships among observed partnerrelated daydreaming general daydreaming and marital relationship quality at three time points we also included firstorder autoregressive paths secondorder autoregressive paths and withintime correlations among all the variables the corresponding path coefficients were constrained to be equal across intervals and gender and marital duration were set as the control variables to evaluate the overall model fit we used the following indices cfi ≥ 090 standardized root mean square residual ≤ 008 and rmsea ≤ 008 specifying different type of attachment style following previous research we attempted to specify different types of attachment styles based on anxiety and avoidance scores thus we conducted a twostage cluster analysis following the procedure recommended by punj and stewart this procedure has frequently been used in psychological research all scores were standardized prior to analysis first we carried out a hierarchical cluster analysis using wards method on squared euclidean distances to identify the number of clusters we examined the dendrogram and clustering validity indices from the nbclust package we then conducted kmeans nonhierarchical cluster analysis using the number of clusters and centroids identified using wards method to form the final clusters multigroup crosslagged panel models to test whether attachment style moderated the crosslagged effects we conducted a multigroup crosslagged analysis we tested whether model fit was significantly worsened by equality constraints across the groups for crosslagged effects of social daydreaming and general daydreaming on subsequent marital relationship quality if the chisquare difference test revealed that model fit was significantly worsened by the equality constraint the crosslagged effects were moderated by attachment style results factor analyses for daydreaming scales parallel analysis using minimum rank factor analysis recommended two common factors for general daydreaming and partnerrelated items at all the time points thus we conducted an efa by setting two factors in the data from each time point separately table 1 reports the factor loadings and correlations obtained from the efa at all time points we found two positively correlated factors that clearly corresponded to partnerrelated and general daydreaming all items loaded highly on the intended factor with coefficients exceeding 040 moreover none of the items exhibited crossfactor loadings exceeding an absolute value of 027 these results support hypothesis 1 longitudinal measurement invariance we examined the longitudinal measurement invariance of partnerrelated daydreaming general daydreaming and each subscale of marital relationship quality table 2 reports the results of the model fit indices and the nested model comparisons strict factorial invariances were achieved for all variables 5 except for the alternatives therefore longitudinal relationships associated with alternatives should be interpreted with caution 5 the absolute values of cfi were not satisfactory for partnerrelated daydreaming and general daydreaming however moshagen and auerswald strongly recommend not using the absolute value of cfi in evaluating the fit of a factor analysis model despite being useful for model comparison this is because cfi reflects not only amount of discrepancy but also loading magnitude for this reason a superior approach is to consider indices that are pure indicators of model fit or pure indicators of construct reliability thus we did not consider the absolute value of cfi for evaluating each factor model descriptive statistics table 3 summarizes the means standard deviations and mcdonalds total omega coefficients for each variable although the internal consistency was slightly low for anxiety it was satisfactory for the remaining variables crosslagged panel models we analyzed the bidirectional longitudinal relationships between partnerrelated daydreaming general daydreaming and each subscale of marital relationship quality using crosslagged panel models the model fits were adequate for all models the results showed that all crosslagged effects were nonsignificant except for investment table 4 summarizes the crosslagged effects of the relationships between social daydreaming general daydreaming and investment specifically the crosslagged effect of partnerrelated daydreaming on investment is positive and statistically significant contrastingly the crosslagged effect of general daydreaming on investment is negative and statistically significant the remaining crosslagged effects were not statistically significant these results suggest that investment supports hypothesis 2 moderated effects of the attachment style cluster analysis revealed three attachment styles that corresponded to previous studies secure anxious and avoidant we report the details of the cluster analysis and differences in descriptive values across attachment styles in supplementary material 3 next we conducted multigroup analyses to investigate whether attachment style moderated the crosslagged effects the chisquare difference tests revealed that this equality constraint significantly worsened the model fit for investment 1476 p 0005 but not for commitment 136 p 0850 satisfaction 659 p 0159 and alternatives 543 p 0246 these results suggest that attachment style moderates the crosslagged effects of social daydreaming and general daydreaming on investment6 a male 0 female 1 table 5 reports crosslagged effects from social daydreaming and general daydreaming to investment per attachment style from the model without equality constraint the model fit was adequate 5723 p 0105 cfi 0988 srmr 0052 rmsea 0050 90 ci 0000 0085 specifically in the secure group the crosslagged effect of partnerrelated daydreaming on investment was positive and statistically significant whereas the crosslagged effect of general daydreaming on investment was negative and statistically significant these crosslagged effects were negligible and nonsignificant in the anxious and avoidant groups these results partially supported hypothesis 3 discussion summary of results our study provides important evidence that the social features of daydreams can play an important role in marital relationship quality especially for the investments people make in their marital relationships consistent with hypothesis 1 we found that individuals propensity to daydream about their marital partners was a separate factor from general daydreaming moreover we found that partnerrelated daydreaming and general daydreaming had opposing effects on investment in marital partners in contrast to general daydreaming which had a negative impact on subsequent investment size in the marital partner thinking about the marital partner at idle moments led to larger subsequent investments these results are consistent with hypothesis 2 additionally attachment styles moderated these crosslagged effects we found a positive effect p 0557 the crosslagged effect of alternative on general daydreaming was nonsignificant in all groups the model fit was adequate 5494 p 0147 cfi 0990 srmr 0049 rmsea 0045 90 ci 0000 0082 of partnerrelated daydreaming and a negative effect of general daydreaming with investment only in the secure group partially supporting hypothesis 3 theoretical implications our study contributes to the theoretical advancement of social daydreaming a growing body of evidence has demonstrated that understanding the consequences of daydreaming in daily life requires an understanding of the specific features of the pattern of thought our research extends these findings by showing that in the context of close personal relationships the daydreaming of a marital partner is functionally distinct from general daydreaming hence our results are theoretically important because they provide empirical evidence showing the uniquely positive consequences of social daydreaming in the context of marital relationships we find these effects only for investment size in marital partners possible since only the investment size has a propertyaccumulation which is directly affected by the propensity of partnerrelated daydreaming daydreaming about a partner can be considered a way in which people put time and effort into their relationship and prior studies suggest that the more often an individual spends time thinking about the partner the more resources are accumulated in the relationship this directed relationship is reflected in the results of the crosslagged models the direction from partnerrelated daydreaming to investment size but not from investment size to partnerrelated daydreaming was significant contrastingly other subscales of relationship quality are unlikely to be directly affected by partnerrelated daydreaming satisfaction level is influenced by the extent to which the partner fulfills an individuals most important needs indicating that the partners propensity to daydream about the individual is more important for the individuals satisfaction level the quality of the alternatives is based on the situation outside the current relationship which is independent of the propensity to daydream about the partner commitment emerges because of the investment size satisfaction level and quality of the alternatives thus the effect of partnerrelated daydreaming on commitment would be blurred our study also provides further insight into the context regulation hypothesis of daydreaming consistent with this hypothesis the results clearly highlight the fact that the benefits of social daydreaming are not universal specifically individuals with anxious and avoidant attachment styles did not show a significant association between partnerrelated daydreaming and subsequent investment in their partner this might be because daydreaming about marital partners was only a way of compensation for individuals with insecure attachment styles individuals who display frequent maladaptive daydreaming which is associated with insecure attachment styles tend to address unmet emotional needs by engaging in compensatory fantasies specific to personality traits if partnerrelated daydreaming served the sole purpose of compensation in individuals with insecure attachment styles it would be reasonable that the time spent daydreaming did not reflect in the relationship the hypothetical compensatory function of daydreaming in individuals with insecure attachment styles should be tested in future research contrastingly individuals with a secure attachment style showed a positive association between partnerrelated daydreaming and subsequent investment in their marital partners this result is reasonable as secure individuals have a positively valenced model of the social world and positively valenced repetitive thought is associated with positive adjustment thus positively valenced daydreaming about their partners which is daydreaming not for compensation or other purposes but for the sake of daydreaming itself could reflect positively in relationships limitations and future directions despite the strengths of this study it has certain limitations first it would have been helpful to use online experience sampling in daily life to examine the situations in which individuals use selfgenerated thoughts to facilitate smooth social relationships while our study reveals the longterm effect of socially focused daydreaming on social relationships momentary experience sampling allows for the assessment of shortterm effects of ongoing thoughts on subsequent behaviors this fills the gap between thinking about another person on the one hand and the pursuit and attainment of meaningful social goals on the other second investigating the mutual effect of thinking about a partner in marital relationships will further expand this studys findings although this study reveals that individuals partnerrelated daydreaming affects their subsequent subjective investment size it is possible that this association would have maximum benefits for relationships in which both partners engage in these patterns of cognition third we identified three attachment styles from the empirical data in spite of the presence of existing studies using four attachment styles specifically the collected data were best fitted to the model omitting the cluster of fearful attachment style which represents both high anxiety and avoidance this is consistent with some previous studies including a study with japanese participants which identified the same three clusters from empirical data moreover as this study mainly focused on the difference between secure and insecure styles the difference in the number of clusters did not remarkably affect hypotheses testing nevertheless future research should examine whether the fearful attachment style can be identified with larger samples fourth the sample we studied was only from japan it is possible that important cultural boundaries in our results will determine for whom and when socially focused daydreaming is most likely to have adaptive functions however we would like to emphasize that our results are consistent with the existing theory which is largely based on western population studies conclusion our study showed that social daydreaming plays an important role in marital relationships moreover daydreaming about a marital partner has beneficial associations with investment in the partner over a relatively long period of time given the important role of social relationships our study highlights that periods of selfgenerated thinking are not always idle fantasies but can play a crucial role as one of the most defining features of the human condition patientsparticipants provided their written informed consent to participate in this study data availability statement the raw data supporting the conclusions of this article will be made available by the authors without undue reservation ethics statement the studies involving human participants were reviewed and approved by the ethical committees of the kyoto university the supplementary material the supplementary material for this article can be found online at 2022904025full supplementarymaterial conflict of interest the authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest publishers note all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations or those of the publisher the editors and the reviewers any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher

preliminary evidence suggests that daydreaming about other people has adaptive value in daily social lives to address this possibility we examined whether daydreaming plays a role in maintaining close stable relationships using a 1year prospective longitudinal study we found that individuals propensity to daydream about their marital partner is separate to general daydreaming in contrast to general daydreaming which was associated with lower subsequent relationship investment size ie magnitude and importance of resources attached to a relationship in the marital partner partnerrelated social daydreaming led to a greater subsequent investment size additionally attachment styles moderated these effects the effect of daydreaming regarding investment size was found only in securely attached individuals this research advances the emerging field of social daydreaming and highlights selfgenerated thought as a critical tool that can help people navigate the complex social world

introduction women have become an integral part of the global workforce in many countries including indonesia womens participation in the workforce continues to increase women now have access to a wide range of jobs and have demonstrated remarkable capabilities in the workforce however increasing womens participation in the workplace also brings new challenges related to worklife balance the increase in womens participation has a number of reasons including supporting family finances achieving career success competency development improving quality of life decisionmaking involvement and the desire for public recognition to be equal to men worklife balance is a relevant issue especially for women who often have dual responsibilities as workers and family caretakers they have to manage professional tasks at work while fulfilling roles as mothers wives or responsible family members this can lead to stress burnout and negative impacts on womens physical and mental wellbeing imbalance occurs when individuals perform exceptionally well in only one role while neglecting other roles that are mutually irreplaceable the impact of imbalance for women workers includes health problems due to being too tired and stressed eventually falling ill thus increasing the absenteeism rate in addition imbalance affects the attitudes of working women such as unhappiness which triggers less efficient work feeling stressed and frustrated at life the development of information technology particularly social media has changed the way we communicate work and interact social media has become an integral part of everyday life and many of us spend significant time on these platforms social media provides opportunities to connect with coworkers family and friends but it can also be a source of distraction that disrupts worklife balance according to zoonen et al social media provides positive impacts such as easy access to information and efficient communication but hugget describes the consequences of using social media the negative consequences that arise are social media addiction stress and worklife conflict social media can be an outlet for stress pleasure so that you forget about time and forget what to do worklife balance is a balance between work and family life as an achievement of satisfaction and good functioning with minimal role conflict it is described by the extent to which individuals are effective and satisfied in carrying out their dual roles in order to achieve a good quality of life in achieving worklife balance support from family and life partners plays a very important role this support can be in the form of sharing household responsibilities childcare and understanding the demands of work this support can help women to more effectively manage their time and roles in addition to support from family support from the workplace also plays an important role in achieving worklife balance company policies that support work flexibility family leave and employee welfare programs can influence womens ability to maintain balance working women who get support from their families will be enthusiastic in carrying out their dual role activities so that their discomfort is slightly reduced another study from russo et al revealed that family support as a major resource in increasing dual role involvement and releasing positive energy therefore family support provides positive strength for working women to be balanced in each role that is carried out padma state that the support of spouses parents children superiors and peers affects worklife balance previous research has shown that an imbalance between work and personal life can have a negative impact on womens wellbeing including stress burnout and reduced quality of life on the other hand a good balance can increase productivity happiness and overall wellbeing this research has significant relevance in providing further understanding of the factors that influence womens worklife balance particularly in a digital age filled with social media through this research it is hoped that solutions or recommendations can be found that can assist women and organizations in achieving a better balance in this context exploring the relationship between social media use family support and womens worklife balance can provide valuable insights for policy makers corporate management and individual women seeking to achieve a healthy balance in their lives methods this research uses a quantitative research approach the population in this study were women who work in various sectors in the bekasi area and have social media accounts using the random sampling method the sample in this study amounted to 96 respondents data collection through distributing questionnaires through various community groups who are active users of social media using a likert scale the data collected was analyzed using the smart pls program to find out the effect of social media use on the balance of female workers and to determine the effect of family support on the balance of female workers results and discussion results figure the results showed that womens social media usage patterns have a significant impact on the balance between their work and personal lives excessive or uncontrolled use of social media can interfere with the time they should allocate for family rest and activities outside of work the results of this study have important implications for women and the organizations they work for women can take steps to manage their social media use more wisely to improve balance meanwhile organizations can consider educational programs or policies that support worklife balance for female employees the results of the study showing the influence between social media use balance and womens worklife balance are important in understanding how digital technology affects daily life these findings can serve as a foundation for developing strategies that help women and organizations achieve better worklife balance in the evolving digital age kumar stated social media as an important component in bringing individual worklife balance social media generates various productive and unproductive behaviors in the lives of individuals research on worklife balance and social media has previously been conducted with the result that social media affects worklife balance the influence of family support on womens worklife balance this research confirms that the level of support provided by family members particularly spouses and nuclear family members has a significant impact on womens worklife balance this support covers various aspects such as the division of household responsibilities childcare and understanding of work demands the results show that women who feel supported by their families tend to have better levels of balance family support can act as a protective factor that helps women cope with stress and pressure that may arise from their dual roles as workers and family caretakers the results of this study can provide a deeper insight into the importance of family support in helping women achieve a healthy worklife balance it can also serve as a basis for the development of better family support programs and organizational policies that support women in their dual roles as such this research has the potential to provide tangible benefits to women their families and their workplaces based on research by wu et al achieving worklife balance increases job satisfaction work commitment family functioning and employee wellbeing furthermore worklife balance keeps individuals away from high absenteeism job turnover minimizes health problems and improves quality of life conclusion worklife balance is a complex and important issue especially for women who often face dual roles as workers and family caretakers in a digital age filled with social media the use of these technologies can affect this balance both positively and negatively meanwhile family support also plays a significant role in helping women achieve a healthy balance this study provides valuable insights into how womens worklife balance is affected by social media use and family support the conclusions underscore the importance of wise management of digital technology and the importance of social support in achieving a healthy balance the findings can serve as a foundation for the development of policies and practices that support better worklife balance for women at work and in their families

this study examines the influence of social media balance and family support on the balance of female workers in the bekasi area the population in this study involved women who work in various sectors and are active on social media a total of 96 respondents were selected through random sampling method from various social media user community groups data was collected through questionnaires distributed online relying on a likert scale to assess respondents perceptions analysis was conducted using partial least squares structural equation modeling plssem with the smart pls program results show that social media use balance and family support have a significant influence on female workers worklife balance the findings highlight the importance of effective time management on social media platforms and the role of family support as key factors in achieving balance between work demands and domestic responsibilities this research provides important insights for companies hr practitioners and policy makers to develop initiatives and programs that support the wellbeing of female workers especially in the context of increased pressure from social media and the need for ongoing family support

in the counseling room of the internet addiction treatment camp chenxing a young man of 17 stared gloomily at the fl oor he recalled the traumatic memory of his father forcing him to kneel at the school gate to shame him for underperforming academically of course he thought he was right because he tried to regain his face in front of others chenxing explained before going on because even if i lose i still have a chance to win but at school i can never win and please them parents and teachers chenxings comparison between school and gaming refl ects widely held sentiments among young people in china many enjoy the competitive nature of combatoriented digital games yet reject hypercompetitive school environments oriented toward gaokaochinas annual college entrance exam taken by 10 million students over two days these students are often labeled internet addicts by psychologists psychiatrists and their parents who pathologize their rejection of educational competition however as this article reveals addicts play games not to avoid competing but to participate in an alternative arena of competition that generates values and meanings they feel attached to chenxing suggested that his fathers actions were intended to reclaim his own sense of respectability by publicly performing his disapproval of chenxing for chinese parents their childrens competitive success at school is often very important this emphasis coupled with their disapproval of competitive gaming refl ects a disjuncture between parents views and those of their children about what competition does and can do this article explores how competitions develop work and infl uence chinese society in both disciplinary and counterhegemonic ways examining their ideologies and manifestations across three competitive arenas formal education online gaming and professional esports i illustrate how chinese youth struggle to meet social expectations for academic achievement in a highly competitive educational system alternative competitive arenas like lol designed with engaging psychological mechanisms allow them to regard the examdriven competitions as badly designed games while the neosocialist chinese state has utilized competition as a technique of governance as shown by the design of gaokao and the socialist market economy it allows young people like chenxing to engage in marketdesigned gaming competitions with outcomes that exceed the states subjectifying intentions like chenxing most trainees in this treatment camp had confl icts with their parents over school and gaming during my fi eldwork about 40 people at the camp mostly males aged between 13 and 25 had been sent by their parents in order to have their internet addiction treated their main symptom was that they spent excessive time playing lol which their parents believed negatively affected their academic performance i interviewed 35 lol gamers from 2014 to 2021 20 of whom i met during three months of fi eldwork in the camp in 2014 i also played lol with my interlocutors to better understand their experiences of competing among these lol gamers 8 had worked as esports athletes professionals differ from amateur gamers in that they suspend their studies and earn money by playing in professional lol tournaments for esports teams the comparative experiences of competition among studentgamers and professional players demonstrate how competing in chinas education systems in digital games and in esports careers differs at the level of practice as people compete prepare themselves to compete and refl ect collectively on competing they generate ethical selfimaginaries through encounters with different designs and outcomes of competition moving between these diverse arenas of competition thus generates contingent outcomes counterhegemonic meanings and ambiguity for competitors the chinese state sees digital gaming as potentially economically benefi cial yet morally harmful for players and struggles to strike a balance between developing a lucrative gaming industry and imposing gaming restrictions on young people to manage gamings dangers the state relies upon both market solutions to internet addiction such as private treatments and regulation requiring gaming companies to install surveillance systems that restrict gaming time for under18s in most treatment camps treatment paradigms include disciplinary military training and psychological counseling in this case addict is a moral label rather than a medical diagnosis and is used to justify institutional control of disobedient youth adrift from the right track of school competition this is demonstrated by the fact that the state hesitated to write internet addiction into medical guidelines in the treatment camp i studied professionals also used family therapy and parent training to solve communication confl icts between parents and children however as i observed there are certain tensions that cannot be resolved through disciplinary actions and talk therapy these are ideologically embedded tensions bound with the overcompetitive reality and the values of social ranking that manifest in different competitive arenas across chinese society by understanding ideology as the thoughts feelings imaginaries and dispositions resulting from a complex interaction between lived experience and conscious construction of dichotomies the article portrays the ideological landscape of chinas youth competitions beyond the dualistic frame of state vs market or socialism vs capitalism drawing on interviews that focus on my interlocutors memories of past competitions perceptions of current competitions and expectations of future competitions i identify ideological formation by inferring their desires emotions and motivations rather than categorizing individuals as corresponding to distinct ideological types i situate ideological formation within peoples attempts to navigate and move between the different competitive arenas data from followup interviews conducted over a period of seven years during which both my interlocutors lives and chinas competitive environment changed signifi cantly allow me to address the fl uidity of peoples competition ideologies within a shifting neosocialist landscape of competition my participant observation of lol gaming also helped me understand how the games design and playful experiences thereof shape players competition ideologies by showing that ideologies are fl uid and fragmented assemblages rather than totalizing constructs the article suggests that there are ideological dispositions associated with competition beyond those of neoliberalism joining the other contributions to this special issue which interrogates what competition does this article focuses on the ideologies that inform and arise during peoples practices of competitions in the arenas of college entrance exams video gaming and esports it also shows that the practice of competing contributes to reshaping the ideological formation of competition competition is not a singular ideological construct a mode of relating that can be assumed to institute a particular set of values and convictions or a political force external to the society shaping peoples lives rather i argue that competitionas a dynamic landscape of dialectical interactions between ideology practice and experienceconstitutes an essential aspect of society even when the market is not a dominant ideological apparatus more specifi cally i argue that the diplomas rankings and prizes that people pursue as objects of desire cannot be reduced to mere markers of neoliberal ideology as people compete they respond to ideological apparatuses such as the diplomaoriented job market by registering a variety of ideological meanings and promises into such objects of desire objects associated with market competition are desired by chinese competitors which makes the competitors appear to be selfstriving subjects conditioned by marketoriented policies however the object itselfin this case the college diplomaoften represents different assemblages of ideological meanings that include but go beyond the market economy as people pursue these objects of desire they rethink what competition is and does and in the process reshape their competitive practices chinese studentgamers animate this dialectic as they tack between different competitive arenas in the process they refl ect on and reimagine dominant ideologies of what competition does competition thus generates unpredictable dynamics of order and disorder ambiguity and authority i start by explaining what the anthropology of competition stands to gain from an engagement with the anthropology of ideology the ethnographic sections present young chinese competitors ethical and practical encounters with three ideological assemblages of competition the singleplank bridge in their examdriven school life the playfulness by design of league of legends and the cruel inequality in the esports market i then explore the fl uidity of these competition ideologies through the story of yufei a young internet addict who in the past seven years switched between different competition arenas in search of a sense of agency and social recognition the article concludes by inviting anthropologists to examine the dialectical interactions between multiple ideologies of competition that occur as people compete thus avoiding a simplistic confl ation of competition and neoliberalism competition as a dynamic landscape although anthropologists have long critiqued the tendency to reify neoliberal economic models as an analytic in anthropological theory others continue to claim that an emphasis on proliferative competition distinguishes neoliberal politicaleconomic models as distinct cultural constructs some studies assume that competition as a neoliberal imposition has a topdown structuring power over the economy for example colloredomansfeld takes competitiveness to be both a method and a goal of neoliberal policy that structures ever more economic practices while consolidating cultural and community commitments chinas recent marketdriven socioeconomic reforms have been analyzed in a similar way for instance hoffman describes how themes of competition following neoliberal logics replaced the maoist values of service and dedication in conditioning chinese peoples lives during market reforms however this work struggles to capture how ideologies of competition are dynamically informed by peoples experience of competing note how hoffmans analysis infers what competition does based on policymakers expectations of competitions outcomes scholars repurposed such inferences to reify competition as a hegemonic force that structures peoples behaviors thus confl ating manifestations of competition at the levels of practice and ideology this article inspired by anthropologists of ideology argues that it is more accurate to understand competition as a landscape of dialectical interactions between ideological assemblages and engagements in specifi c competitive practices and arenas in other words the ideologies associated with competition cannot be reduced to state or market institutional artifi ce that structures economic practices and conditions peoples lives anthropologists have long observed that ideology emerges through the lively interactions between actors within power relationships bound with specifi c contexts postmarxists such as gramsci challenged the marxist tradition that sees ideology as a false consciousness and focused on how ideological hegemony is exercised rather than designed by the dominant class through hegemonic apparatuses such as schools religious institutions and media anthropologists who critically adapted this theoretical tradition used ideology to study rituals in blochs study of a circumcision ritual in madagascar he observes that ideology is too subtle to be plotted by powerholders the royal ritual of circumcision for example was a case of collusion between inferiors and superiors rather than a mystifi cation carried out by superiors on inferiors this observation resonates with gramscis argument that ordinary peoples popular philosophytheir disjointed and episodic conceptions of the worldare also crucial for domination to work following this line of thought i argue that when the chinese government attempts to institute certain forms of competition to subjectify people competition and associated ideas about what it does generate an unstable and dynamic fi eld of interaction between the state and the people this fi eld is mediated by families schools and game companies each of which shapes desires for competitive success and the objects of social recognition that competition can yield such as certifi cates diplomas and game rankings peoples subjective experiences of competition and the outcomes they associate with it change as they compete in different competitive arenas they move between these competitive spheres seeking more satisfying and pleasurable outcomes but fi nd each one to be limiting and disappointing in its own ways as they move between these variously structured forums different outcomes and subjective experiences prompt them to constantly reevaluate what competition does or could do in the process they rethink what competition can do for them and reshape their competitive practices and strategies in a dialectical fashion particular competitive arenas shifting competitive practices and changing ideas of what competition does and can do combine to form dynamic ideological assemblages of competition as the ethnographic sections will show some of these assemblages such as gaokao are made dominant when popular understandings of competitions outcomes align with those espoused by offi cial state structures or market entities others such as online gaming competitions may give way to alternative and counterhegemonic perceptions of what competition does peoples continuous selfimprovement during educational competitions and gaming competitions often derives from hybrid ideological forms rather than neoliberal ideologies alone my interlocutors diverse and shifting critical refl ections about what different forms of competition do indicate that chinese young people are not selfstriving subjects who struggle between market and state in latesocialist neoliberalism like their parents socalled internet addicts fully understand the importance of college diplomas however their competitive experiences as esports gamers reveal other possibilities of obtaining social recognition through competition ideological apparatuses associated with market and state play important roles in shaping these emerging forms and possibilities of competition but people are not mechanical actors choosing only between these two options rather they experiment with different competitive forms structures and strategies to achieve a sense of dignity and selfrespect in the following ethnographic sections i examine the social and institutional dynamics that make certain forms of competition socially desirable obligatory or alienating for ordinary people i show how specifi c inferences about what competition does are manifested in dominant ideological assemblages while addressing the fl uidity of such ideologies refl ected by chinese student gamers competitive practices gaokao the singleplank bridge i fi rst met yufei in 2014 seven months after he had fi nished his residential therapy then a 16yearold yufei had been a professional lol player for two years his memories of school and family were not happy his mother a hardworking teacher at a high school that yufei did not attend devoted more time to her students than to him his father was a highranking police offi cer usually absent from home his parents profi les were typical of those who sent their children for internet addiction treatment the most common professions among my interlocutors parents were teacher police offi cer and physician people in these highly respected occupations tend to be too busy to take care of their childrens psychosocial development and instead pressure them to study hard and earn a college diploma these parents lived through the early stages of chinas market reforms and saw fi rsthand the fi erce competition and widescale layoffs of employees at stateowned enterprises during the 1990s hence as competitors themselves they were keenly aware of the importance of a college diploma to their childrens security and social positions for most chinese students getting a diploma means taking part in the countrys extremely competitive public school system passing the gaokao college entrance exam and attending a good university held once a year and taken by 10 million students over two days gaokao is a daunting prospect my interlocutors described gaokao as thousands of troops crossing a singleplank bridgea metaphor indicating the limit of choice about participating the narrowness of the task and the intensity of competition for my interviewees this expression alluded to the negative consequences of poor performance that fueled their anxiety about failure falling off the bridge and failing to enter a good college would lead to limited job market opportunities and undesirable social positions the revival of gaokao went hand in hand with the revival of the market economy in china in the late 1970s prior to the market reform the maoist government was determined to eliminate propertybased and intellectualbased social differences through land reforms labor movements and the abortion of eliteoriented educational competitions the offi cial screening system for job allocation and promotion made class background and fealty to marxistleninist ideology its priority however maoist china did not abandon competition instead it reassembled competitions with marxist inspirations these manifested in the cults of labour heroes during the 1940s and the labor contests that emerged during the 1950s however this movement turned into the great leap forward with different social sectors aiming for unsustainable goals which devastated chinas socialist progress this failure compelled maos successor deng xiaoping to carry out economic reforms moving away from the stalinist model deng sought to utilize the market as a socialist tool to regulate production under the new banner of a socialist market economy the ideological apparatuses of competitions were expanded from labor production to societywide competitions based on marketdriven subject classifi cation and social ranking at fi rst glance gaokao competitors anxieties seem typical of those faced by a neoliberal subject compelled to selfmaximize but failing to obtain a desirable position in the free market yet this assumption disregards competitions history as a mode of social engineering and subjectifi cation in chinaa history that predates neoliberal ideology public investment in competitive education has been practiced since the han dynasty while belief in meritbased competition is rooted in chinas transition from aristocracy to meritbased leadership many centuries before the emergence of similar systems in europe this ideological hegemony was opposed by some confucian elites who held that meritbased exams lack moral exemplarity and by modernist elites who believed that the exams content would undermine chinas modernization however today this history has transmuted into both a marketoriented governmentality and a myth held among ordinary chinese that gaokao is the last remaining institution of fair competition uncontaminated by capital and corruption my interviews with yufei and other interlocutors show that their aspirations and anxieties also exceed reproducing market positions yufeis father often reminded him that those who do not study well will fall from the social ladder as will be discussed later the social ladder is an ideological metaphor with which yufei engaged in different ways when he was 14 yufei found it diffi cult to do well in required subjects such as english and chemistry consequently he felt he was not recognized as a good student by his father despite his effort moreover he disliked his teachers who seemed interested only in students exam scores and class obedience gradually he lost interest in studying and often rebelled against his teachers almost all my interlocutors described their competitive achievements at school as meant to please adults xianrong a 15yearold male student who attended a highranking public high school explained to me why his parents sent him to the camp they always want me to stay at the top i once met their expectation but in this school i couldnt sustain the expectation as many people here were crazy intelligent i felt frustrated about my ranking and lost interest in studying later i joined friends to play in the internet cafés and performed even worse at school my parents think its computer games that ruined me and turned me into a bad student as yufeis and xianrongs words show chinas educational system is permeated with familybound pressures these pressures derive from the confucianisminfl ected patterns of social control that make parents feel morally obligated to encourage high achievement in academic competitions and to discipline children who perform poorly during interviews trainees parents expressed a sense of helplessness more than a selfserving competitive ethos the mother of xiao a 15yearold trainee told me that she had been taking moodadjusting pills before sending xiao to the camp i thought xiao was misbehaving because i was not a responsible parent who disciplined him when i attended those parents meetings i felt terrible when the teacher called out xiaos ranking in front of the class the looks from other parents buried me with shame kuan argues that when middleclass chinese parents enroll their children in afterschool classes and force them to spend all their free time on homework they do so both because it is a rational choice in a competitive market and because they feel compelled to save face in a chinese moral world that emphasizes constant ranking likewise chenxings father forced chenxing to kneel at the school gate not only to motivate chenxing to be more hardworking but also to manage his own shame schools compound families stress by publicly ranking students test scores my interviewees reported that those who do poorly in class are often branded as bad students and are subject to criticism and ridicule from their teacherswith parents themselves shouldering part of the blame both parents and students mentioned the strong feelings of honor and shame associated with the public posting of scores and rankings after each major exam which reminded many of their failures in this way competing in gaokao has given rise to the ideological assemblage of the singleplank bridge among chinese students and their families this assemblage is built upon multiple competitive dichotomies successfailure good studentsbad students winnerslosers through their encounters with the ideological apparatus of gaokao the parents inferred that their childrens success in a competitive public education system is one of the few wellpaved ways for a dignifi ed upwardly mobile life this refl ective inference is associated with a collection of different ideological values which include patriarchal responsibilities and paternalistic social control the myth of meritocracy embodied memories of the socialist past and utilitarian values of the marketized present and projected future chenxings father vividly expressed his understanding of this historical continuity and fl uidity its in our chinese dna that we need to strive hard to change our fates think about the ancient male elites who proved themselves after studying for so many years by passing the imperial exam entering the court and bringing glory to their homes i was not a college student because in the 1970s i did not have good educational resources in the countryside because of the cultural revolution but i strove hard and managed to fi nd a decent job bring my family to the city and get my child into a good developmental environment so i would want chenxing to at least do better than me by getting a good college degree therefore the ideological assemblage of the narrow plank bridge is not utilized by the state simply to institute peoples perception of fairness it is also a loosely assembled yet powerfully dominant synergy of fragmented ideologies that emerges from the market the school the family and ones relationship with oneself others and historical images of the nation as haugbolle observes ideology is a genealogical process in the sense that political thinking affords a dialectic relation between the current situation that animates refl ection and the broader political tradition in which the subject is set parents efforts to make their families achieve a more agentive and dignifi ed position in the neosocialist present refl ect both contemporary market logics and shifting historical understandings of the relationship between competition and social mobility league of legends playfulness by design parents pursuit of respectability was however alienating for my young interlocutors refl ecting on his psychological challenges xiao confessed in a group counseling session my parents and teachers always told me to study for my own sake but i never fi gured out what this meant outside their expectations for me to succeed another trainee lei a college student who was successful in the eyes of his classmates and neighbors was also sent for treatment as he got lost in digital games after he entered college he said i felt like a puppet manipulated by my parents from the college i went to and the major i studiedeverything was chosen and arranged by them i sometimes thought that my life was meaningless xiaos and leis accounts questioned whether their parents competition ideologies and subsequent actions were right and attempted to fi nd meaning beyond them this ideological refl ection was slightly different from that of university students who questioned the remunerative and moral value of university diplomas after gaokao by cultivating other capabilities beyond exams critical refl ections like xiaos and leis formed synergies with other competition ideologies transmitted through their playful engagements with league of legends during my fi eldwork in 2014 lol was the most popular game among chinese students many of my interlocutors found it to be a more meaningful competitive arena than school which they described as a poorly designed game based on a multiplayer online battle arena lol became popular in china in 2012 and has been marketed as the worlds largest esport with tournaments held around the globe the main mode of the game pits two teams of fi ve players against each other each team occupies and defends half of an arena where each team has a base nonplayer characters known as minions are generated from each teams nexus a large structure within the base and advance toward the enemy base each of the ten players controls a champion 1 with unique abilities and a distinctive style of play heroes can revive in the base after waiting for a short interval after being killed during a battle heroes kill monsters minions or opposing heroes and destroy enemy defenses earning experience points and gold that they can use to purchase items and upgrade their powers and abilities meanwhile they must prevent the opposing team from destroying their own defenses and avoid being killed by opposing players players must be familiar with each heros unique powers and abilities as well as each items features in order to select and use them tactically a team wins by penetrating the enemy base and destroying their nexus after each match which can last anywhere from 15 minutes to an hour all ten players will have their performance statistics displayed with detailed scores and rankings refl ecting each players number of kills assists and deaths my interlocuters described ingame competition as extremely engaging because they felt like real heroes fi ghting and killing opponents while lol is designed to be highly engrossing the intensity of attention and investment of energy that these youths dedicated to learning the game and becoming competitive was remarkable although there were more relaxed games available my interlocutors ended up choosing a highly challenging arena that was no less competitive than their school lives to win gamers had to stay highly alert to avoid losing any small advantage every click of the mouse and keyboard mattered a reaction of a fraction of a second could determine the outcome of a battle encounter infl uencing the speed of the team in upgrading their items and skills and thus of having a further competitive advantage over their opponents to improve players had to turn all combat responses into mechanical fi nger memories and practice constantly to fi nd winning strategies within a team such practice required a great deal of effort but most players did not fi nd it boring because they enjoyed the sensory rewards associated with each highly responsive action these rewards were compounded by lols excellent visual and sound effects along with other ingame mechanisms that kept people wanting just one more game and these synthetic sensorial modalities were registered by my interlocutors as playful engagements that produced quick and meaningful competitive experiences and easily obtained symbols of recognition in their daily conversations about lol at the treatment camp the most exciting topic was caozuo a tactical and playful combination of mechanical moves capable of producing contingent and often dramatic outcomes the term caozuo was often used to highlight the technical skills of the gamer to outplay others for example xiaobao a 13yearold boy still in primary school would often initiate exciting conversations about his caozuo the last time i played kate katarina an lol character the opposing teams xindela syndra another lol character tried to oppress me with her longer attack range with a shorter hand less advantageous attack range of kate i knew i would be oppressed if her combos reached me but i had the spell flash kates ability to move instantly so when xindela used qe player clicks q and e on the keyboard to cast a spell combo i used e clicked e on the keyboard to move to the back of her and oppress her instead this wave of caozuo worked as i traded blood with her using kates higher strength as a cost to consume xindelas lower strength then i used another set of combo and outplayed her here xiaobaos quick reactions and skillful play led to his success in an encounter where he initially seemed to be at a signifi cant disadvantage a fantastic caozuo like this may not kill the enemy but it will be a surprise and grab everyones attention making the game more exciting while a successful caozuo gives a players team an unexpected advantage a failed caozuo puts the team in danger of losing more advantage points as another student who joined our conversation pointed out if xiaobao had encountered a more experienced player who could have predicted his move his character might have been killed in yufeis words caozuo is what makes lol sportlike as it requires a fastrunning brain that calculates the enemies reactions and coordinates the fi nger movements it also adds the fun of contingency as it disrupts the normative rhythm of gaming by creating advantage positions from seemingly disadvantaged positions moreover caozuo implies a philosophical tension between the rules and contingencies generated by a combatoriented digital game the players must be extremely familiar with the machinic orders and game rules while creatively interpreting them to carry out surprising moves and contingent effects to outplay the enemies when asked why people enjoy caozuo in lol liang a 17yearold studentgamer replied well it is impressive even if i lost the game people would still remember the exciting moments brought by my caozuo malaby argues that play is a disposition toward the world which as a mode of cultural experience intimately connected with a disordered world can be differentiated from the cultural form of a gamelike activity that is rulebound while most competitors fi nd it comfortable to follow the rules provided by the game designers some seek the excitement of outplaying their opponents that comes from mastering implicit rules beyond the designers intentions therefore caozuo associated with a contingencydriven competitive ethos makes the actor an agent within social processes the agency is not confi ned by individual intent or measurement but allows for the unintended consequences of action as people effectively make a bet that the consequences of actions will be to their advantage when caozuo works for the team as liang commented it appears like a magic that signifi es hope in a disadvantaged situation this magical capability contributes to the players identifi cation with the heroic character and respectability within the team when expressing their enthusiasm about caozuo my young interlocutors were relating to experiences of competition that can be enlivened through practices leading to a magical contingency of hope and a desirable heroic subjectivity the culture of caozuo also offers an ethnographic window to understand moba competitions beyond being a neoliberal utopia that normalizes neoliberal order this becomes especially clear when lol competition is contrasted with the dominant ideological assemblage of gaokao for example yufei explained that through caozuo what he enjoyed most about playing lol was the ability to save the whole team from a disadvantaged position and enjoy a feeling of achievement and respectabilitylike a superhero for him the superhero selfimaginary was composed of both the individualistic capability to mechanically outplay enemies and the collectivityoriented help recognition and respect among peers this imaginary could hardly be experienced in the school lives of yufei and other studentgamers when comparing school life to their game experience my interlocutors doubted that teachers want students to make friends at all except to motivate one another to get higher exam scores jiang a 14yearold trainee captured this concisely study brings me rivals but games bring me friends school exams also afford little space for disordered winning based on contingent strategies the right answers to most exam questions are predetermined refl ecting a strictly orderbound competitive arena whereas the caozuo afforded by a game indicates an indefi nite number of possible right answers although lol games also produce a publicly visible ranking system that motivates players to work harder the consequences of these rankings are represented and experienced differently as chenxing explained i dont have to please the adults with my game results in moba competitions although the system could also cause shame these feelings are managed by another algorithmdriven playermatching system that maintains the hope of winning among less skilled players players who lose frequently are matched with players of similar or lower skill in future sessions the matching system mitigates the sharp winnerloser dichotomy and the shame associated with losing in school however there is no system to keep the losers on track if students continue to fail they are either further shamed to increase their motivation or abandoned by teachers as chenxing commented i play lol not because i always win but because even if i lose i still have a chance to win but at school i can never win and please them parents and teachers while the dynamics of play further contribute to the fl uidity of competition ideologies they also shape another ideological assemblage around gaming as china opened the market the engaging game mechanismswith balanced designs and diverse choices of characters skills and rolestransmitted liberal market ideologies to chinese youth through the creative and addictive gaming experiences they facilitated game companies drive for profi t went hand in hand with childrens desire for a better competition experience that provided them comfort recognition friendship and temporary freedom from the restrictive competition of schooling although my interlocutors understand that a university diploma can help them achieve stable and recognizable social positions in the long run they have discovered an alternative source of social recognition through the shifting playful dispositions encouraged by a games design the recognition and the ideological promises of success offered by moba games are ironically felt as more stable because they are designed to be more accessible expectable and visible than the ideological promises of social positions offered by gaokao and preached by adults school competitions and gaming competitions resonate with each other by promising the competitors a moral connection with stabilized social recognition in neosocialist china through symbols of success and dignity although these symbols are associated with different ideological assemblages competitive experiences and imaginaries of self and others esport the cruel inequality despite failing to achieve recognition from his parents yufei built rapport with his gaming peers and realized that he was a good lol player he also identifi ed with lol stars in the media whose success differed from his parents vision of success as his parents were absent during summer vacation he decided to suspend his studies and join a local lol professional team as an esports trainee without notifying his parents as long and moore argue achieving engenders new forms of imaginative engagement with self and others that are transformative profoundly affecting and highly diverse in yufeis case his achievements in gaming and failures at school have reproduced what bateson calls a symmetrical relationship with self and others bearing a symmetrical pride toward the environment yufei made a daring decision to join a socially visible competition business denounced by his parents to prove himself a winner to his teachers peers and parents this symmetrical pride was fully realized when yufei entered the esports team as he recounted at the age of 14 i could already make 4000 yuan per month as an esports athlete the average salary of the city i lived in he tasted the happiness of receiving recognition from adult team funders and winning over peers through his athletic skills of caozuo in contrast to his miserable memories of judgment at school however a career in esports is not only about gaming unlike traditional sports the development of esports has been infused with capitalist interests from the very beginning after yufei joined the professional team playing lol became a routine activity in his life to hone their skills team members practiced lol from 830 am to 1000 pm as time went on yufei felt something changing in his body he showed me a protrusion on the wrist bone of his right hand which was formed by holding the mouse for long periods of time he said that whenever he was immersed in lol and when the sense of happiness rushed through his body the bone would protrude against the desk after playing too many times the bone did not retract again gaming thus led to physiological change as the playing body became a laboring body under a ludic disciplinary regime by joining the capitalist competition process esports players who hoped to wash off their addict identities also got the chance to refl ect upon their social position in the competitive market which shaped their selfimaginaries in ways different from the amateur gamers the identity of the ultimate winner in an international esports tournament is typically associated with the patriotic ideology of national honor yet receiving prizes at different tournament levels which most esports players described as their life goal is no longer viewed as a despicable counterrevolutionary mindset as it might have been considered in maoist china rather it is seen as the cruel inequality of competition that has been made desirable through the prizes high cash values and symbolic fame in lin and zhaos study a professional gamer revealed the bleak income inequality in the esports industry very top players may earn tens of millions per year while most ordinary players may just earn about rmb 5000 about us 728 per month kai an esports athlete i interviewed in 2018 was disillusioned about a career in esports after training for one year most people came with a dream of becoming the star player who earns millions but the fact is only one in ten thousand players could fulfi ll this dream a teenage player usually starts as a trainee but many trainees like me will retire by their early 20s without the chance to play in national tournaments if you cannot stand out at a young age you will soon lose your competitive strength its simply too competitive you think you are a good player at your school but when you are sent into a pool of excellent lol players you feel the ceiling soon and after you retire you have no competitive skills besides lol not even a high school degree esports athletes in szablewiczs study made similar critical refl ections about the dramatic shifts between winner and loser subjectivities the winnerloser dichotomy in the esports industry increases pressure among esports professionals because the result it symbolizes is more starkuntold riches vs povertythan the results of gaokao where a lowerranking student can still enroll at an average college the assemblage of competition ideology in professional esports differs fundamentally from that of amateur gaming although it is still fun for the professional gamers to play lol those who fail are left little agency to mitigate the sharp winnerloser dichotomy this is in clear contrast to the algorithmic matching system of amateur lol gamers who are able to win irrespective of their skill level many esports players i interviewed chose to also attend gaokao while they pursued an athletic career but unlike yufei most did not manage to fi nd a sense of creative agency in either school exams or professional esports meanwhile as peoples visions about the future were shaped by their engagements with ideological apparatuses most middleclass families struggled between esports and exams as if these two were the only reliable paths to social recognition however as yufeis story in the next section shows there are certainly other roads toward a neosocialist success although they are not wellpaved social ladder the dynamic neosocialist landscape of competition after the summer of 2013 yufei continued his esports career displeased his father used his strong social capital to contact the director of the internet addiction treatment camp the director agreed to pick up yufei by pretending yufei had been invited to participate in a research program for esports athletes after yufei met the director he became immediately controlled by the drillmasters and sent to the treatment camp at the beginning yufei resisted the therapy asserting that he was an athlete not an addict and attempted to manipulate the counselor he was initially assigned to he said at that time people gave me the nickname counselor killer recognizing my achievement of making my counselor a male in his thirties cry in front of me i didnt think these counselors could give me any help he continued to imagine himself as a skilled player who would outplay the counselor through what he called calculations of human nature and was thus transferred to doctor zhu who handled the most diffi cult cases to avoid establishing a competitive relationship with yufei doctor zhu sent him to morita therapy a onemonth period of solitary confi nement without any entertainment during the therapy things began to change one night during his confi nement yufei dreamt that he was playing lol he felt the genuine excitement of getting immersed into the fi erce competition and killing spree the excitement gradually escalated as the game progressed and fi nally woke him up the moment he awoke he could not tell if the game was a dream or reality the thrill of the game still occupied parts of his body and drove him as he gradually realized that it was a dream to return to the game yufei described his initial feelings after the dream as not only excitement and craving but also a revelation despite refusing to be labeled an internet addict he was shocked that his unconscious was imprinted with the emotional and corporeal memories of game play the dream represented a nostalgia for his previous experience of competing as an esports athlete where he played as a hero but this surrender to the pure joy of gaming could also represent to yufei an addict identity despite his denial in the long morita diaries yufei wrote following his dreams the previous narrative of a glorifi ed athlete became a storyline of a morbid gaming addiction yufei expressed his determination to embrace the reality of the social ladder imposed by his father go back to school and stop being an esports athlete which he now believed lay at the lowest social rank when i asked yufei what made him classify esports athletes as the lowest rank he explained have you looked at their eyes when these people get high on games their eyes are aimless their life is without a purpose or meaning and they make so little money in many ways they are like migrant workers their job is not wellpaid not esteemed by the public and they do not have a recognized social role you are a good student so even if you play games in your leisure time it is acceptable because you have kept your social role but these people dont which makes them the lowest rank yufeis journey of reform puzzled the director of the camp who as a psychiatrist did not expect that such a diffi cult case would recover so quickly however i understand yufeis recovery as the contingent outcome of the interplay between ideology and experience in the dynamic competition landscape yufeis resistance against the singleplank bridge not only sent him deeper into engaging esports competition but also cultivated his heroic selfimaginary and competitionoriented selfother relationships making him assume the role of a professional esports athlete and take every institutioneven the treatment campas a competitive arena where he outplays others yet ironically after he was beaten by his own uncanny dream he reidentifi ed with the powerful ideological assemblage of the social ladder imposed by his father that one needs an offi cially designated role to succeed despite renouncing gaming two years after yufei left the camp he quit high school and became an awardwinning professional lol player for fear of losing social position he still attended gaokao without a highschool diploma and was enrolled into a local tiertwo university but after staying there for two years he again decided to quit the university and go back to the esports industry as he found university boring this time he became an esports entrepreneur involved in the lucrative business of athlete trading riding on the esports boom around 2018 he became a millionaire and invested in several other trendy businesses in the video game industry in his own words he had managed to win on a different athletic track the last time we met in 2021 at a luxurious restaurant yufei talked about his milliondollar investment projects in other industries following state regulation of the gaming market to my surprise however he still admits that he is an internet addict who would spend thousands of yuan at one time quickly leveling up and becoming the top player in a mobile game simply to enjoy the sense of purchased superiority this time there is no shame involved in his expression as the addictive game play no longer represents weakness for a successful business competitor with social position yufeis fl uid competition ideologies could only develop from the dynamic competition landscape where since the 1980s chinas neosocialist governmentalities loosened the totalitarian ideological control in chinese society opened up new and diverse competitive arenas generated new power relations and created spaces to contest dominant ideologies new ideological assemblages of competition constantly emerge through peoples encounters with a rich reservoir of symbols that represent ideological promises which constantly furnish and refurnish their knowledge of competitions individuals identify with multiple ideological assemblages at different times yet still make some consistent meanings out of them when refl ecting upon his successes in entrepreneurship yufei said my parents always wanted me to take the normative highway they had prepared but it turned out that the undiscovered lanes excited me more i could have become a phd like you but whenever i returned to the normative track i would be impatient i felt like i am born an athletic competitor and enjoy the excitement of uncertainty till today my father still does not get why i could become successful and i never asked for any support from him yufei still wished to be recognized by his father who imposed on him the social ladder imaginary however he found that the social ladder had become differently assembled from his fathers outdated view that one needed an offi cially designated role to succeed he identifi ed with emerging roles that were not entirely offi cially designated and discovered the implicit rules of an increasingly complicated neosocialist social game in which he could still outplay the others as he had learned in lol while the rules of any competitive arena stabilize certain social processes they shift since the social processes themselves are open to changes and contingencies as the competitive gaming market developed yufei found capitalenabled playfulness and a stabilized source of recognition beyond the shamefi lled institution of gaokao the fantastic world of lol and the stressful labor of esports yufei seeks to fi nd more agency in chinese society by tacking between and creatively adapting different competition ideologies conclusion this article presents the dynamic and fl uid landscape of competition in neosocialist china for the state competition can be a productive force for development but it is unwieldy because it can make young people less willing to stay on the designated track of statesanctioned competition for young people competition can be a stressful experience but it can also be utilized as a medium for developing counterhegemonic values and a sense of creative agency there is no best way to resolve the tensions that emerge between different competition ideologies however this does not stop people from imagining and seeking out better competitions or alternative competitive ways of achieving a sense of dignity and social recognition studentgamers seek such alternatives as they move between the arenas of formal education recreational gaming and professional gaming across these spheres competition results in subjective experiences of joy excitement achievement and hope but also shame frustration loss and disillusion such experiences lead studentgamers to develop and revise their expectations of competition both in specifi c arenas and in general in ways that sometimes align with and sometimes depart from normative ideas of what can be achieved by competing in other words they discover that the stakes of competition entail not just diplomas prizes status or the loss thereof but also existential questions such as what is worth competing for how to compete and the extent to which competition enables a fulfi lling life shifting ideas of what competition does or could do for them prompts students to try out different competitive forms strategies and practices which in turn leads to further changes in their understanding of the possibilities that competing offers them these fi ndings contradict simplistic confl ations of competition and neoliberal economic models such analyses assume that state actors impose competition upon populations with certain expected outcomes and that populations therefore come to share state actors expectations of what competition does by contrast this article has shown that competitionas an ideological assemblage of expectations practices strategies and structuresis not singular fi xed or imposed from the top down rather ideologies of competition are multiple constantly morphing and recursively revised following the unexpected outcomes people experience as they compete in and move between different competitive arenas future analyses of competition would do well to take a page from the anthropology of ideology and approach ideas about the social consequences of competition as continually emerging from the interplay between established expectations of competitions outcomes and the lived experience of competing in practice yichen rao is a postdoctoral fellow in the lieberthalrogel center for chinese studies at the university of michigan he uses ethnographic methods to study the social impact of digital technologies such as fi ntech and video games in china he has published in journals that include economy and society economic anthropology and history of psychology he is the recipient of a hunt postdoctoral fellowship and a dissertation fieldwork grant both from the wennergren foundation orcidid 0000000332732516 email yichenr umichedu note 1 in china league of legends is translated as yingxiong lianmeng

many chinese students dislike hypercompetitive public school exams but fi nd competing in esports games enjoyable some students are perceived to game too much by their parents who anxious about gamings impact on their grades send their children to treatment camps for internet addiction this article documents parents and studentgamers experiences of competition in chinas formal education system online gaming and professional esports as studentgamers move between these competitive arenas they develop counterhegemonic understandings of what competition does and reconfi gure their sense of self their movements reveal that far from a symptom of neoliberal ideology the prevalence of competition in china marks dialectical interactions between various ideologies and the lived experience of competitive practices this fi nding contradicts simplistic confl ations of competition and neoliberal economic models

introduction residential care for older adults has evolved in developed countries that have followed the indoor relief welfare state model of the united kingdom where the 1942 beveridge report 1 built on the historical workhouse model to create a cradle to grave social security for people of all classes 2 residential care is increasingly becoming the place of palliative care and death for older adults once people move to residential care this domicile is typically their final home 3 the new zealand context has to a large extent adopted the beveridge model and more recently added neoliberal embellishments there is a burgeoning of independent living facilities for relatively well older adults and progressive levels of care available for people experiencing frailty and the impact of longterm conditions that contribute the degrees of dependency 4 with increasing care needs residents have reduced privacy around intimacy and sexual expression as they may require increasing staff assistance around the practicalities and the furnishings required to be physically close to a partner in the early 21st century a new norm has evolved for life care outside the family which effectively atomises dependent elders fostered by a neoliberal approach to health and aged care a market has been created and a business case made to fill it 5 this capitalisation of older persons adds complexity to the construct of personcentred care with considerations of whether this is a relational model or one in which the resident is positioned as consumer we consider this point in more detail below this marketdriven model is quite different from the postwar social insurance model originally envisioned by beveridge old age has been commodified and transformed into profitmaking opportunities by private entities this neoliberal context has a deleterious impact with the emphasis on riskaverse policy management rather than personcentred care 4 people are increasingly frail on entering residential care in new zealand 437 of people who move to supported residential care live for less than a year and 243 move into care in the final three months of life 6 approximately 47 of adults in new zealand use residential care for late life care with this increasing to 66 for those 85 years and over 7 of note currently most people in residential care are of european ethnicities with only 47 indigenous māori and 23 of pacific people using residential care 89 although they constitute 165 and 90 respectively of the total population 10 although cultural notions of caring for elders within families may account for these low proportions of utilisation in noneuropean cultural populations the number of people in care in all groups is predicted to rise significantly in the next decade with a shift away from intergenerational living 8 residential has become the de facto hospice regardless of ethnicity for many older adults 11 for the purposes of this article palliative care refers to the care of people whose condition is lifelimiting and endoflife care relates to when people are actively dying 12 the palliative care context differs in residential care compared to the role of hospice services for younger adults internationally the hospice philosophy and funding models are designed to reserve inpatient care for those with complex symptom management issues for stabilization for respite care and for those who are actively dying whose preference is a hospice death 13 the hospice model primarily focuses on athome support throughout the palliative and active dying stages however in the residential care context the key predictive entry factors relate to curtailed independence around frailty and cognitive impairment rather than disease exacerbation and the imminence of death 14 this differing reason for entry to residential care has meant that traditionally residential care has not been identified as providing hospicetype care 11 this underaccentuated role of palliative care in residential care can mean staff are illprepared and inadequately supported around endof lifeplanning and dialogue with residents and family members 15 impacting on personcentred care the discourse of personcentred care is commonplace in the residential care context with abundant literature on the topic however there is a dearth of publications that link the concept of personcentred care to palliative care in this situation the hallmarks of personcentred care include foregrounding the person rather than biomedical diagnoses and symptoms upholding dignity the provision of tailored flexible care maximising the persons involvement and control of decisions and recognising the fundamental importance of relationships 1617 the uncritical ubiquity of the term personcentred care poses the risk that managerial and care staff believe that by using it they are enacting it and centralising all aspects of the residents personhood the gap between rhetoric and reality is noted in an integrative review by byrne et al 18 these authors identify definitional commonalities in themes of valuing both the care receiver and the care provider the partnership space integral to personcentred care is compromised in timepoor contexts 18 however substantial evidence indicates a personcentred focus is fragmented for reasons beyond care rationing particularly in relation to residents expressions of intimacy and sexuality 19 20 21 22 23 a point we explore shortly the concept of personcentred care has a complex multistranded genealogy in the 1940s the humanistic psychologist carl rogers developed a personcentred approach to care that emphasised human potential towards growth and what he termed selfactualisation a hallmark of the latter is that quality of life is defined by the person rogers believed flourishing was possible and relevant into the late stages of life however this late life potential required relational conditions of unconditional positive regard and opportunities for closeness and intimacy 24 the disability rights movement in the 1970s added to the push for care that eschewed biomedical reductionism and instead focused on peoples subjectively defined needs and resources the movement also argued for societal inclusion and accessibility rather than the responsibility for adaption being placed on people with disabilities 25 disabilities were reinterpreted as located in environmental barriers rather than individual abilities the application of the concept of personcentred care to the lives of older adults was led by kitwood 26 who emphasised the relational aspects of the approach odwyer 27 argues that the rise of neoliberalism has distorted the earlier origins of personcentred care that affirmed relational engagement and instead accentuates a consumerbased model of individualism and choice we concur with loughlin 28 who argues that the term is operationalised with ubiquity in health documents without the implementation being clearly conceptualised how care is conceptualized is also impacted by managers social constructs about care homes ettelt et al 29 in a uk qualitative study with 24 care home managers noted that the ways care managers thought about personalised care differed depending on the overall metaphors they applied to care homes their analysis identified three different architectural conceptualisations institution home and hotel in turn these viewpoints resulted in divergent ways the care managers made sense of the personalised relationship with residents while managers wanted to distance their approach from the institutional motif they concurred that with care rationing and routinisation aspects of the institution could not be erased regulatory compliance around safety and risk at times intruded on personalised care the family metaphor was preferred by most managers in ettelt et als study this orientation included encouraging intimacies between staff and residents that are usually discouraged as boundary breaches in acute care settings such as hugging and kissing the notion of care home as hotel led some managers to rename typical home spaces as commercial places for example the dining room was described as a restaurant a hotel metaphor was used in the endeavour to teach staff the quality of care required we are struck by the irony that staff might imagine they would provide better care in a hotel than in a care home we draw from the related concepts of social and sexual citizenship and authentic ageing to inform our understanding of personcentred care we argue that it is naïve to arrive at an understanding of personcentred care in residential care without identifying major obstacles a key hindrance is ageism odwyer 27 identifies that consumerism and modernitypostmodernity result in the cultural rejection of anyone old particularly people who bear the hallmarks of ageing including physical frailty and cognitive impairment this exclusion is exacerbated by a neoliberal understanding of the commodification of persons and the value of their economic productivity although there is veneration of older people for example in confucianbased and most indigenous cultures the covid19 pandemic has highlighted openly ageist discourses internationally see for example 30 the concept of social citizenship is largely predicated on individual agency to selfgovern social citizenship is a term coined by marshall 31 a sociologist in the united kingdom who argued that ideally citizenship entails access to social civil and political rights brannelly 32 considers that the ability to be selfgoverning is a narrow and dehumanising view that robs persons of dignity and inclusion an inclusive alternative conceptualisation of citizenship is one who cohabits with others 32 with the emphasis on interdependence support and reciprocity this reconceptualization is also termed relational citizenship 3334 sexual citizenship affirms enfranchisement and belonging including peoples need for affection and intimacy that transcends frailty and cognitive impairment 35 the concept of authentic ageing rather than the narrower biomedical construct of successful ageing is proposed by hughes 36 as intersecting with that of citizenship authenticity in this context relates to holding both the potential for growth and change until death and the acknowledgement of the inevitable vulnerabilities that come with the finality of life or as one of our participants put it living until you dont as researchers and practitioners we consider that the construct of personcentred care is sociopolitical in nature and vulnerable to reductionist distortion optimally personcentred care in the residential care setting enhances social and sexual citizenship and communitas understood as a shared community of experience that includes residents families and staff 37 communitas is associated with the development of connection and intimacy in the coming together of people experiencing liminality we consider that residential care is an exemplar of this betwixtandbetween space both a home of sorts and a workplace 3839 authentic ageing as integral to personcentred care means that all partiesstaff families and residentsview residents as people with ongoing connections to families and communities with the possibility of change and growth as well as people with embodied vulnerabilities that create interdependence and dependence personcentred care informed by relational citizenship includes seeing residents as having the capacity for intimacy sexual expression and closeness that is not necessarily commensurate with cognitive ability 35 several decades of literature and legal cases that have made international headlines highlight that the bounds of personcentred care in the residential palliative care context stop short of consideration about residents needs for affection intimacy and sexual expression 19 20 21 isolating individuals from affectionate or intimate touch runs contrary to the notion of citizenship and personcentred care institutional or managerial anxiety about putative riskor the appearance of riskeither to a resident or institutional reputation means that in many cases risk management or risk avoidance is prioritised over full citizenship of residents and their wellbeing or flourishing in this way residents are further vulnerabilised although there are pockets of excellence internationally it is commonplace for a gulf between policies and practice to exist and between aspiration and the necessary leadership and staff education to fully implement those policies 2223 more broadly new zealand is a democracy with relatively liberal laws and social policies including marriage equality for gender and sexually diverse people and the decriminalization of homosexuality and prostitution 23 aged care regulations support rights around sexual orientation and expression 40 but policy implementation is fragmented 41 when people in new zealand enter residential care they are required to have appointed an enduring power of attorney usually a family member who will take over decisions on their behalf should the resident lose cognitive capacity 42 however paternalistic custom and practice and limited staff education in residential care mean that family preferences override residents choices even when residents have capacity 38 families are unnecessarily consulted about matters about which they have no legal right or need to know and residents rights to privacy are ignored frail older adults in care are vulnerablised by the attitudes and anxieties of staff families and other residents this vulnerability is made worse where cisheteronormative assumptions mean that gender and sexually diverse residents fear or directly experience disenfranchisement stigma and discrimination 2343 or feel forced into covert identities the built environment additionally creates obstacles unless residential care homes are designed with intimacy and privacy rights in mind 44 residential care is an ambiguous space in relation to privacy due to the constructed communal context of people who are not organically part of the same community or tribe and because residents care needs mean regular intrusions on publicprivate boundaries 4546 organisational culture makes a significant difference to residents quality of life and that culture reflects what is valued by leadership how communication occurs how rules and procedures shape care and what counts as success 1546 leadership and rolemodelling are especially significant in upholding relational citizenship around intimacy and sexual expression 2247 the research question guiding the larger project asked how are ethical decisions being made about expressions of intimacy and sexuality in aged residential care 41 the broader project focused on examining how everyday decisions are made which result in tacit practice ethics the study impetus came from clinical and legal practitioners seeking clarity about the ethics and complexities of consent that occur commonly in residential care despite these requests throughout the larger research project we also met opposition to our study from some senior physicians and the leadership of a national advocacy organisation for older adults the position taken in these instances has been that there are much more compelling issues the sector is facing and that our research focus on intimacy was a nicetohave extrathe icing on the cake of residential care we consider that a personcentred care approach that is inclusive of social and sexual citizenship is fundamental to ensuring life worth living rather than the social death and warehousing of frail older adults 48 the aim of this article is to consider how a personcentred approach to residents intimacy and sexual expression can be supported by families and staff throughout palliative and endoflife care in the residential care context the results highlight that personcentred care discourses and practices must be inclusive of a social citizenship conceptualisation of people with the potential for and right to intimate and sexual expression through their entire lives this personcentred orientation is inherently political focused on enfranchisement and equity this position requires managers and clinical leaders to engage with at times complex ethical situations and not to resort to an overreaching duty of care argument that excessively vulnerabilizes older adults 48 materials and methods these qualitative data are drawn from a national twoarm mixed method study in aotearoa new zealand thornes 49 methodological approach interpretive description was used this methodology draws from factual material and social constructionist analysis to aid investigation of the messy world of healthcare the social constructionist paradigm focuses on how meanings are created sustained negotiated and interrupted 50 procedure and participants purposive sampling was used to recruit a national sample of staff residents and residents family members from large medium and small care providers to stratify the sample selection for the qualitative arm of the study staff completed a survey and interviews were conducted with staff residents and family members the research team provided an introductory presentation about the study for staff at each facility senior staff then provided fliers to residents and family members and posters were visible in the facilities residents either contacted the team directly or via a family or staff member semistructured interviews were conducted between october 2018 and october 2019 with participants recruited from 35 residential care homes across the country project staff conducted 61 interviews with 77 participants recruited from the participating facilities interviews were conducted at a time convenient for the participants in a safe uninterrupted venue in the facility interviews were completed as follows staff 36 interviews residents 26 interviews with 28 people family members 12 interviews with 13 people this article focuses primarily on staff interviews although a full report that includes all interviews is available at ethical considerations the study was approved by a university human ethics committee participation in the study was voluntary participants were informed about the study respect for confidentiality and anonymity were discussed and written consent was obtained before interviews the ethics committee was satisfied that the research team had demonstrated expertise in sexuality research data analysis audio recorded interviews were transcribed thematic analysis guided by braun and clarkes 50 six steps of data analysis was undertaken to identify key themes these steps involve the following initial data familiarisation assignment of preliminary codes search for patterns across the dataset clustering themes naming themes report writing to ensure rigour with interrater reliability the research team independently read and coded all transcripts 51 all team members then reviewed others coding and through meeting and dialogue collectively developed themes analysis was both deductive and inductive and it was only during the data analysis phase that it became evident to the research team that the palliative and endoflife context of residential care was entwined with staff family and residents accounts about intimacy and sexual expression and that this point is not foregrounded in the extant literature interview questions brought forth this connection questions to residents included given that varying degrees of acquaintances friendships and more intimate relationships are a part of most peoples adult lives how easy or difficult is it to continue with these relationships here in your opinion what is the role of staff in managing and supporting peoples personal choices and safety in relation to intimacy and sexuality questions to family members included did the transition to rac separate your relative from important networks relationships friendships intimate partners what intimate relationship issues would be of concern for you questions for staff included to what extent do you think that fostering connections including supporting intimate relationships is the role of staff what if any benefits do you consider might occur through staff structures and policies allowing for people to continue intimate relationships in residential care can you give some examples from your experience results the following themes were identified through the analysis process care home ethos and intimacy everyday touch as intimacy ephemeral intimacy and intimacy mediated by the built environment together these themes highlight the particularities of intimacy and sexual expression during the palliative and endoflife phases in the residential care context residents were reliant on staff values as to whether they are treated as socially alive and therefore support for intimate expression was considered part of personcentred care participant accounts indicated that when staff treated residents as socially alive staff friendliness and connection through everyday touch became a meaningful part of residents world other residents at times provided a level of intimacy that staff and families either encouraged or thwarted the built environment typically presented obstacles to intimacy and privacy with design features focused on surveillance and the assumption that bedrooms would have a single occupant care home ethos and intimacy the values and advocacy of clinical staff appeared to impact on whether supporting intimacy and sexual expression was considered part of care sexual citizenship was contested theres some staff who just cant tolerate it any expression of intimacy its the way they feel personally and you have to say to them hey you cant say that they cant sit together and hold hands and stroke each other because theyve got that right and they need that and if theyre happy in the moment and its relieving that loss and that sadness and that misery and even if its half an hour of happiness well just because you cant stand it and you think because thats not their husband how can you say no to that this staff member worked in a care area for people living with dementia and highlighted that a personcentred approach to residents expressing intimacy was effectively shaped by caregivers personal moral positions this paternalism created occasions where staff automatically assumed it was their right to intervene in intimate expressions by residents and this was noted by other participants over the last 25 years maybe now ive noticed a shift towards husband and wives theyre a little bit more accessible they can share a room i still think theres horror surrounding maybe sexual activity but certainly if a relationship develops between residents within the rest home of a nonplatonic nature or if ones come in and the spouse is outside or its a partner who is outside i still think were quite obstructive because we dont have the places for them to go their rooms are small and ive just found that my colleagues attitudes around relationships is that theres a cutoff age and thats usually probably 65 and then after 65 whether it be handholding kissing or anything just should stop and that its it just doesnt happen this participant highlighted the interplay between ageism staff interactions and the assumptions that have informed the design of the built environment each of these features appear to reinforce the other to the point that the staff participant has noted a change over several decades staff also noted that in the palliative care context the involvement of caregivers may be required to support the practicalities of physical intimacy between a couple a staff member described facilitating a couples intimacy through discussion with the resident and a plan what he wanted is to have a cuddle how do we facilitate that what he said to me is that i cant really transfer from the chair to bed so i wanted them to be private so i did the do not disturb sign and everything so i said okay what you need to do is well talk to your nurse here talk to the other nurse there where his partner was and then when you go over there when shes available you can always ask the nurse for you to be transferred into her bed and from there thats it some staff perceived that they were part of the intimate lives of residents providing emotional and physical comfort even though they may be the only staff person facilitating such care we spend our lives as adults growing up to look for that all night cuddle with someone special and isnt it the cuddle that intimacy of cuddle that is the most comforting thing i think thats something that people in residential care get robbed of very much is that they dont get any of that touch they dont get any lovely touch they dont get hugged every day unless im there one staff participant related a story about upholding sexual citizenship around a residents preferences with her lingerie she had to contest the familys view that the resident was socially dead when you are faced with a decision think first and foremost if this would be my mother assuming you absolutely adore and love your mother what would i do real story you look in the residents drawer of underwear and theyre all ripped and ugly this person has most probably another month to live and loves underwear and loves real nice underclothes well the nurse comes to us and says what can we do this is ugly can the family buy them something the family goes no then you can be totally assured we will make this purchase we have actually encountered the family response of no theres no point because the person is dying and were going oh my god theres a whole point a manager described the ways his personal views had strong links to his practice including advocating for and facilitating sexual citizenship for palliative residents like my own values for me its like im living each day as it is my last for this particular resident if tomorrow he died or she died i know that she had a good day even having a massage or sex with a sex worker isnt that amazing that we have been part of that that i advocated and facilitated that she died happily despite new zealands legal protection of the rights of gender and sexually diverse people the interviews highlighted participant perceptions that residential care was not yet necessarily a safe space for these residents a daughter commented as long as gay people stay away from me i dont care what people do thats other peoples lives the family has got to be happy about it as well and every family is different it might not be a drama for some families my sister and i would be quite horrified if that partnering with a woman happened to mum another family member commented about a resident who was vocal about any signs of affection between residents it would be like if there were a couple of gay gentlemen in there she would be absolutely horrified shed be mortified this woman and it would just be a massive no for her so i would imagine she would make that very difficult for those people another family member spoke about her brother who was dying of cancer in a catholic residential care facility i dont know how you could be intimate in a place like that his being gay would maybe be a problem for him its not a problem for me maybe the home i dont know what their attitude would be i dont know whether they know hes gay or not maybe they dont hes had a wife hes got children so he doesnt present as a gay man this comment highlights the uncertainty family members and residents encounter when facilities do not clearly signal support for gender and sexually diverse people however a few staff participants spoke of their facilities readying for a shift at an organisational and policy level by going through the national silver rainbow training programme provided by a nongovernmental organisation this programme provides facilities with an organisational needs analysis and education programme the following participant was not aware of any current gender and sexually diverse residents but affirmed the importance of readiness for change we are certainly prepared for a gearing up to a change probably sooner rather than later so yes we have our silver rainbow tick and we have worked quite hard on a lot of policies and procedures and that side of things while this preparation is significant the participant did not appear to appreciate that change has already happened in that gender and sexually diverse people already live in residential care hidden in plain sight a staff member drew attention to the liminal space that is residential care purportedly a home and yet without the hallmarks of home in part because of such large groups of otherwise unconnected people being brought together so we can make it homelike but it is actually not a home it is still an institution and there are rules and even in your own house i mean i cant just do what i want i live with somebody else and theres rules weve got house rules so were quite often told here this is their home and they should be allowed to do what they want and blahblahblah yes i get that but yes also theyre living with 46 other people and i only live with one other person and i cant do whatever i want and she cant do whatever she wants because theres rules this participant expected new residents to fit in with institutional rules rather than being a part of determining the parameters of communal living however another staff participant emphasised that in the facility where she worked there were significant efforts to create a homelike space where intimate others could feel welcome we have a 24hour a day open door seven days a week so from a cultural perspective weve got a māori lady and her daughter stays overnight at times we either provide a room or they can stay in the room this room here has been turned into a whānau extended family room where they can stay if theres three four or more and a shower is available we serve breakfast here the manager described his efforts to navigate this publicprivate space and to privilege the concept of home a resident said all i wanted is for you to call me by name not darling not love call me by my name because thats the only thing i have and then respect my privacy and thats what were trying to implement thats what weve been telling staff all the time reminding them staff that even though this is a hospital that this is their home were invading their home so all we need to ask is consent to get into the room or whatever it is clear in the above quote that the contested context of residential care impacts on the possibility of personcentred care the family member of a resident who had recently died commented on her grief at the attitudes of other residents towards any intimate expression between her and her husband there is very little chance for couples to enjoy any sort of sexual relationship even holding hands is sort of sniggered at by everybody in the room most of the rooms have got single chairs with arm rests in between and you cant sit close you cant sit and have a cuddle and if you do people are laughing at you neither of us realised how much this would impact on our lives as a loving couple we had always valued our private intimate moments together but now every moment had to be spent in public with others watching our every touch even facial expressions of love were seen by others and probably commented on the communal context of residential care along with the limitations of the built environment discussed further below detract from the possibility of personcentred care around intimacy and sexual expression resident participants also spoke of not even knowing if they were allowed to be sexually intimate in the residential care context in our study we found limited evidence of facility staff proactively educating and guiding residents with respect to intimacy this silence communicated that intimacy was an unspeakable topic the result was that residents did not voice their concerns to staff and assumed that intimacy was not permissible one resident recounted declining his wifes intimate advances because he was unsure if it was ethical to respond my wife suffers from dementia as far as im concerned to the best of my knowledge sexual relationships with me are not on i dont know whether i mean some little while ago i woke up with wife by my bed crying i asked her why she was crying and she said i thought you were dead you were cold and i hadnt seen you for four days then she got all gooey if thats the right word which i did not respond to as i possibly should have done because i dont think that a person with dementia is in a position to make those sort of decisions the following day when i tried to raise the question with her she said whats it all about and shed forgotten all about it so if i had taken advantage of her to put it that way that would have been very wrong i think i dont think that shes in a position to make those decisions the residents experience highlights the oftencomplex decisions older adults are grappling with alone even in established relationships the interviews highlighted that the care home ethos is shaped by all members of the communitystaff residents and families everyday touch as intimacy some staff highlighted in effect that personcentred care is a relational practice where the boundaries of friendliness and professionalism overlap to offer residents meaningful engagement so that when you are touching people intimately and youre cleansing someone you can still touch them warmly and do that very consciously well there is still that boundary there and youve still got to be professional but it doesnt have to lack authenticity or warmth personalising care requires taking intimate notice of residents i think that most of us here all get a cuddle or an arm around them or youre looking gorgeous today you know give them a kiss or i better get you a new lippy lipstick or something like that i think that a lot of them in care miss out on a physical touch and i think thats important it can just be an arm around you saying hey you need a haircut or whatever but i think thats important that they have that touch of another person that actually cares i think thats very important a family member spoke of seeing what she termed a craving for touch when she visited her relative in a dementia care unit there were people who were very tactile with us like when we visited there were particular older women who would want to come and give you a hug or sit next to you and pat your hand physical touch was something they were obviously really craving they would always want to come and give the kids visiting children a hug this same family member spoke of touch as a human right i just think it seems like a fundamental human right really to have that physical touch and have the ability to continue that part of your existence even though you might have changed where youre living or how youre living i do understand that the issue of consent can become pretty fraught in an environment where people arent necessarily always clear on their behaviour and why theyre doing the things theyre doing so i can understand that its really difficult its a conundrum for where the boundaries are with that this family member in effect appeared to indicate that prioritising residents access to touch should not automatically be overruled because consent issues can be complex participants views highlighted that individual staff acted in effect as champions affirming their relational role with residents and the importance of touch ephemeral intimacy part of citizenship enfranchisement in personcentred care involves staff and family members being aware of residents capacity for new significant relationships to develop with the concomitant grief when these relationships end through the death of one of the parties a family member noted the loss for her mother and that these losses were compounded by the segregated nature of the care facility where most of her companions were likely to die soon they got to know each other a wee bit resident got sick and died as they tend to do and thats one of the things as far as mental health and wellbeing goes i noticed with my mother is that she finds that she gets to know people but then they die as they tend to do at a certain age and in a place like that youre surrounded by very elderly and often very unwell people people are going to pass on thats something which mum has mentioned a few times as being a bit sort of depressing really apart from the staff there isnt a lot of young life or energy one daughter showed awareness of her mother as socially alive with the capacity for meaningful connection albeit fleeting not long after mum came there was a lady came here she was 99 she turned 100 in july and mum just adored her and resident adored her as well resident would just sit in her chair she could feed herself but they had this amazing relationship it was so lovely mum just kind of took care of her resident died probably a month ago they had a really strong bond it was lovely to see a resident living with huntingtons disease spoke of the rich intimacy and pleasure a shortlived relationship with another resident brought to her life we fell in love we had cups of tea and had a lovely time and then he died we had a sign that we put on the door i didnt want him to die i loved him i had him as my friend and for sex it was good we used to go to each others rooms the relationship warmed my heart these exemplar quotes illustrate the importance of staff noticing and supporting residents preferences around companionship and facilitating the development of connections between people a staff member spoke about their conceptualisation of care i think it is part of our role fostering intimacy and connection given that they have come into care and intimacy is part of the care you are having the whole person come in so you should be catering to all their needs not just showering getting dressed the intimacy and the touch thing is part of who they are as well so we should be facilitating and fostering that these participants were clear that what counts as personcentred care is not generic and needs to be adapted to the care context a staff member indicated that she and her colleagues were stymied in their efforts to enable a couple who had met in the facility to stay together until they died they were overridden by family wishes and appeared not to have any guiding protocols to manage such situations my main thing with it was how are we as an organisation for aged care supposed to say if the families dont want them to be together but they want to be together because our point of contact is the familywhatever the family says we do sometimes its just ridiculous he ended up passing away in the toilet then about two days later she passed away they were both fully for each other and then the families told us to stop it we did it we stopped it then he passed away about a week later after we stopped it then she passed away two days after him it was just stupid it just happened so fast we didnt know what to do as the workers because we knew that we were kind of taking away their reason for living in the residential care context a personcentred approach that includes sexual citizenship may not be possible without family agreement the staff prioritisation of residents physical safety without thought of innovative solutions was highlighted by a participant who described staff not allowing another resident to lie in bed with him one day she was motoring around on her electric scooter and i didnt know her from a bar soap as soon as we started talking we felt participant cries we felt wed known each other for years she goes in and out of periods when one day shell know who i am and the next day gone due to dementia so i have to be very patient and wait for her to go through her stupidity with the parkinsons part of her well im not allowed to lie with her because i havent got a crash pad that she can fall onto and that sort of nonsense but i would have thought that they would understand that i would be catching her every moment and not let her get out into a situation where she could be in danger herself its that kind of interference although the above example possibly includes complexities around consent what we noted in our wider study was typically an overriding notion of a duty of care applied by staff meant it was uncommon for staff to prioritise intimacy and to work actively with residents physical and cognitive challenges to find solutions intimacy mediated by the built environment an ethos of personcentred care is not commonly reflected in the built environment where architectural design and furnishings reflect a wider assumption that the resident will be single and solitary and easily accessible to staff a participant spoke about the obstacles to intimacy throughout her husbands stay and during his dying hours the rooms were very small you were lucky if you could get one chair in the room apart from the bed i would go in there and i would get a chair in his room and i would sit on the chair he would say to me where are you going to sleep how about you sleep in the bed and ill sleep on the chair he used to worry about me all the time when he was the one that was sick i had only been gone ten minutes and he just died the only reason i went home was because my legs were swollen up so much from sitting there all day from six oclock in the morning till nine oclock at night i just couldnt stand any more and i just had to go home if it had been possible and i could have crawled onto the bed and lay beside him so that my legs werent hurting i could have stayed there right till the end and i would have a staff member commented that hearing about our research had prompted their staff to reconsider this structural impediment to intimacy so now weve got a quote for a companion bed to put into a room so that we can create that space especially if someone is dying but not necessarily even then but you can actually jump on the bed and its going to be big enough to have a cuddle you can sleep beside them we normally set up a layzboy beside a bed at the moment but obviously comfort wise its not quite the same and you dont get that full body press you dont get that spoon isnt spooning the best thing in the whole wide world here we see that staff can be responsive to education and that engagement with our research project had encouraged reflection and brought about a small change in their comments about spooning the staff member indicated that they were able to perceive the resident as socially alive with the capacity to be comforted and experience joy through touch staff reported that it was uncommon for double rooms to be available and that it was a routine practice for couples to be separated to different areas of the facility as individual care needs changed we did have a husband and wife in the dementia wing he was in a room down one end and she was down the hall a way and that was hard because she was wanting to care for him but his health was very poor and he eventually died hed actually broken a hip and had to go to hospital then he went to our hospital and we had to take her down there and she wanted to stay with him all day and it became quite a difficult thing so in the end the family said we cant come up all the time i think they paid someone to take her down there for a while but that even got too much because she wanted to be there all day in the end she had to just have that whenever they said that you can go and shed cry quite a bit very hard because they were devoted the staff member appeared to accept the status quo of the architectural and care arrangements that created obstacles to intimacy for this couple and that these aspects were part of the inevitable griefs and losses at the endoflife to be worked around from our interviews it appeared that design features reinforced staff and family members resignation about the curtailment of intimacy discussion our study findings highlight that key areas that impact on intimacy and endoflife care include staff and family values residents internalised assumptions of limited rights the invisibility of policy and the implicit signals from the architecture and design about whether residential care is a home or a steppeddown medical facility this article makes a novel contribution in foregrounding the context of palliative and endoflife care in relation to intimacy and sexual expression in residential care which the extant literature does not do our results indicate that personcentred care can be only partially realised when residents are not treated as entirely whole persons including their intimate relationships and sexual selves and where residents are unaware of their rights not provided with information and dialogue they need to make decisions when these decisions are made based on others values and judgments or when institutional risk avoidance or management is prioritised our findings add to the literature in demonstrating that such an approach to care matters even and especially into the final days and hours of life our findings indicate that the ethos of a care facility is very important and that families and residents as well as staff contribute to this ethos to count as personcentred palliative and endoflife care in the residential care context carers must acknowledge intimate expression for residents as fundamental to personhood our findings show that staff need education and leadership guidance to ensure they are not deferring to family preferences excessively we concur with morrissey stahl et al 11 that cultural myths about older peoples declining intimacy needs and capacities along with a narrow cisheteronormative conceptualisation of sexual expression mean that the subject is typically ignored by health providers as evidenced in our study important connections were either sustained with staff and family support or truncated in an ad hoc manner with staff and family preferences and values predominantly shaping care importantly our findings show that staff residents and family members typically followed custom and practice and personal values rather than any mention of legislation and policy guiding practice although policies and legislation per se do not automatically achieve this goal of sexual citizenship our findings indicate that education in these matters may contribute to staff readiness for change of note our findings indicated that staff and family participants who witnessed residents intimacy losses preferred that arguments about consent capacity did not nullify residents apparent longing for touch and connection this point about the importance of considering wellbeing as having merit as well as consent arguments has been made in the theoretical literature 1847 and this article adds empirical data where participants voiced this preference in the theoretical literature cook et al 47 noted common ethical themes in their analysis of residential care intimacy and sexuality policies available internationally wellbeing was a significant consideration particularly if the resident had some degree of cognitive impairment and usual consent assessments were impacted wilkins 52 recommends an individualised casebycase assessment as this diagnosis does not equate with global incapacity the medicalisation of sexual consent assessment as if it has equivalence with consent for medical procedures is problematic 5354 additionally tarzia et al 53 contend that evidence of wellbeing and the right to sexual expression in the residential care context should not be overridden by complex theoretical arguments about capacity staff anxiety and lack of education about sexual expression can readily result in excessive social control rather than judicious implementation of a duty of care 54 this family control was evident in the presented interview data particularly in the example of where staff felt unable to act on behalf of two residents that families wanted separated despite their death being imminent in instances where people are living with a dementia our findings highlight that due to the absence of assessment practices and dialogue with residents about intimacy and sexuality fundamental pieces of information were missing and impacted on palliative and endoflife care an individualised approach to dementia care has been termed narrative care whereby attention to paid to the overall story of the persons life rather than the imposition of abstract preordained ethical rules 5455 our findings show that the sexual story of residents lives is commonly absent from socalled individualized care alongside narrative approaches and duty of care cook et als 47 policy analysis also noted recurring themes of respect dignity and human rights our findings demonstrate that these points are particularly significant in the palliative care of older gender and sexually diverse adults there is scant literature about this topic and of note our interviews showed that other residents and family members may contribute to the felt sense of alienation for residents whose lives do not conform to heteronormative views henrickson et al 2355 noted that managers and staff were pivotal in setting the tone of a facility and how accommodating a facility would be for sexually diverse residents they also demonstrated a clear generational effect in staff attitudes with current attitudes of older staff shaped by prevailing attitudes of their formative years stevens and abrahm 56 identify that additional education is important to provide culturally competent care to gender and sexually diverse people in the palliative context examples of such care include staff engaging affirmatively with the persons chosen family using preferred pronouns support to maintain preferred gender presentation and meticulous confidentiality 5758 rosa et al 58 note that heteronormative and cisnormative lenses alienate intimate partners and caregivers and emphasise that c are that is dignified personcentered and concordant with a patients values must honor the sacred bond of familyhowever they define it the present study highlights that facility staff preferably exercise a high degree of caution around claims of already realised personcentred care provision in the palliative and endoflife context in residential care settings and instead consider such care a dynamic work in progress we concur with loughlin 28 that assumptions that this care vision has been implemented already curtail critique of what is likely to be a fragmented application of personcentred care the personhood of frail older adults who may have some cognitive impairment is contested and this loss of personhoodsocial deathis most evident around intimacy and sexual expression 343538 when we began this study we were unaware of the extent to which the built environment and related decor would come to shape our view of how strongly architecture and furnishings are linked to recognising residents sexual citizenship including throughout the endoflife period the current study is novel in drawing attention to this point outside of the traditional hospice context we concur with bellamy et als critique of hospice design 59 that architectural homogenization has contributed to care spaces that emphasise the clinical workplace over homelike environments that provide for the possibility of intimate companionship bellamy et al also note a paucity of architectural terms of reference for creating personcentred palliative care spaces it is notable how little progress has been made on the architecture of indoor relief and historic workhouse models of care in novel findings our participants provided stark examples of how the limitations of the built environment the furnishing and attitudes of staff and families in combination meant that some residents experienced restrictions on their desire for intimacy zadeh et al 60 note a breadth of evidence identifying that palliative care design features have real effects such as frequency and length of visitor stays conversely appropriate furnishings and amenities impact positively on the palliative experience in the residential care context significant people in the residents life are also likely to be older and experiencing frailty and other health issues that warrant consideration according to findings in our research palliative design is an integral consideration when endeavouring to provide care that acknowledges sexual citizenship the operationalisation of personcentred care is impacted by the way the built environment is interpreted our data demonstrate that a liminal sense of place somewhere between a workplace and a home mean that palliative sexual expression is contested and surveillance and institutional convenience may prevail over personcentredness in relation to liminality a family member is quoted in the findings referring to the facility as a place like that it was notable across our dataset that family members and residents repeated used this phrase or the alternative in a place like this rather than ever naming the facility as their home although ettelt et al 29 do not use the concept of liminality they usefully point to the impact of care home managers architectural conceptualisations of facilities as an institution home or hotel our data highlighted the importance staff and family members placed on facilities being homelike or not and in part made this assessment based on staff expressions of closeness and friendly touch with residents as part of personalised care the current studys findings add to the literature about the importance of staff assuming the role of a type of surrogate family member for residents as part of everyday intimacy in residential care we consider that odwyer 27 poses a significant question about whether personcentred care positions the person as a relational being or a commodity within a neoliberal largely privatized residential care market 4 in our study staff and family members valued relational care chamberlain et al 61 identified the significant role of staff for residents who were unbefriended and incapacitated in their study they noted staff spoke of navigating a fine line between possible assumptions by other residents of favouritism and providing additional relational care but nevertheless perceived they had a role as surrogate family this positioning was also identified by our participants recent studies highlight this vital surrogate role staff have played during the covid19 pandemic around relational connection and endoflife care 6263 we concur with theurer et al 45 that staff need to cultivate opportunities for social connection in residential care that are meaningful for residents rather than merely providing light timefilling social activities with goals of entertainment and distraction in short if residential care takes account of intimacy and the sexuality and sexual life of a resident in an unanxious way it is likely to provide meaning and purpose for every aspect of that residents life like all studies the data on which we have based our findings discussion and recommendations have limitations these are set out in detail at in our full research report at the link we have included above while we initially set out to develop a probabilistic sample of facilities stratified by bed number and location practical and realworld challenges meant that we had to abandon our probabilistic strategy although we still recruited a stratified quota sample of facilities therefore the facilities must be regarded as a sample of convenience and subject to the usual limitations of such samples our participants were richly diverse and reflected multiple points of view still we are likely to have attracted participation both from facilities and from staff residents and family members who were interested in and comfortable talking with us about issues related to intimacy and sexuality the ages of residents and the cultural backgrounds of all participants meant that not all possible participants were comfortable with such conversations staff were surprisingly eager to talk about these issues since they had encountered them in their daily encounters with residents because the purpose of qualitative research is to explore an issue indepth rather than a population we make no claims about the generalizability of our findings nevertheless we believe the data provide a useful foundation for analysis and recommendations our recommendations are as follows if care is to be personcentred then it must be tailored to those receiving care rather than policy that foregrounds risk management and an institutionally centred approach personcentred care means treating residents as socially alive and possibly redefining what professionalism means since staff often act as surrogate family for people living in care facilities staff families and residents will benefit from education about legislation including the purpose and limits of enduring power of attorney to ensure that there is not paternalistic overreach in families and staff intruding on residents privacy and decisionmaking our study highlighted that creating the opportunity for dialogue can enhance staff critical reflection resulting in change staff education around the incorporation of the routine assessment of intimacy and sexual expression and gender and sexual identity can shift these topics away from being taboo while our findings support the utility in facilities having accessible intimacy and sexuality policies that are part of staff and resident induction it is also apparent that senior staff who champion such documents are fundamental to change through rolemodelling practice translation they are better positioned to uphold sexual citizenship through endoflife care 4664 conclusions this article highlights the importance of critiquing the ubiquitous use of the concept of personcentred care and considers what aspects of personhood are typically excluded from this care aspiration we are very mindful of the increased pressures on residential care staff in a postcovid19 environment we believe the reflective personcentred care approach will result in less stress on staff as personcentred care increasingly transfers decisionmaking about social citizenship wellbeing and intimacy to the resident we have recommended a critical approach that draws from the concepts of social and sexual citizenship and authentic ageing to ensure that takenforgranted ageist and cisheteronormative assumptions are not driving care decisions we have highlighted the liminal space that is residential care and how conceptualisations of institution home and hotel contribute to care decisions and the identities attributed to residents the study indicates the vital role of staff who if willing to do so become an important part of residents intimate world our participants and our discussion draw attention to the dearth of collaboration between care providers residents researchers architects and designers resulting in built environments that defy relational efforts by staff and families to engage in personcentred care residential care for older adults is predominantly a palliative and endoflife care service and it is essential that this care is not the poor relation of hospice services provided to younger people currently neoliberal profitdriven drivers eclipse personcentred care 4 if older persons in care are truly to liveand live fully in all aspects of their livesuntil they die it will be essential that contemporary residential care and its amenities move beyond historical workhouse models into lively places of innovation and care for whole persons data availability statement not applicable informed consent statement not applicable

commonly frail older adults move to residential care a liminal space that is their home sometimes a place of death and a workplace residential facilities typically espouse personcentred values which are variably interpreted a critical approach to personcentred care that focuses on social citizenship begins to address issues endemic in diminishing opportunities for intimacy in the endoflife residential context riskaverse policies limited education ageism and environments designed for staff convenience a personcentred approach to residents expressions of intimacy and sexuality can be supported throughout endoflife care the present study utilised a constructionist methodology to investigate meanings associated with intimacy in the palliative and endoflife care context there were 77 participants including residents family members and staff from 35 residential facilities analysis identified four key themes care home ethos and intimacy everyday touch as intimacy ephemeral intimacy and intimacy mediated by the built environment residents expressions of intimacy and sexuality are supported in facilities where clinical leaders provide a rolemodel for a commitment to social citizenship ageism restrictive policies carerationing functional care and environmental hindrances contribute to limited intimacy and social death clinical leaders have a pivotal role in ensuring personcentred care through policies and practice that support residents intimate reciprocity

introduction value is a central concept in discussions of heritage and conservation practice from international conventions to local conservation policies complex contextual and at times contested values are at play the values being privileged may be explicit or they may be hidden within objective or professional evaluations of significance the importance of social values the significance of the historic environment to contemporary communities including peoples sense of identity belonging and place 1 is increasingly recognised however there are tensions between conserving and preserving while changing as little as possible the principles that have traditionally guided heritage and conservation practice 2 and maintaining a places significance to communities in the present these challenges have meant that in practice historic and aesthetic values tend to override others such as social value in heritage significance assessment 3 a focus on significance assessment as the first step in heritage management has become accepted practice in national and international conventions 4 the burra charter 5 issued by icomos australia in 1979 has been widely credited as a key development in shaping these practices 6 the initial charter attempted to bridge the divide between tangible and intangible heritage with a range of types of value considered as part of establishing significance 1 it states cultural significance means aesthetic historic scientific or social value for past present or future generations 5 as lesh explains 7 the inclusion of social value in this definition owes a lot to the specific history of conservation in australia and what is meant by the term has varied in practice over time subsequent revisions of the charter have given greater prominence to the social values of contemporary communities as an important part of cultural heritage 89 seeking to clarify what has been an evolving concept and reflecting the influential peoplecentred processes adopted by australian heritage practitioners since the 1990s 7 pp 55 56 although initially emerging in a national heritage context these ideas have been developed through international heritage instruments such as the 2005 council of europe framework convention on the value of cultural heritage for society 10 and have been widely adopted in other national contexts for example the influence of the burra charter can be seen in english heritages conservation principles 11 and it is expressly cited in the definition of cultural significance given in historic environment scotlands national policy 12 this growing emphasis on social values has raised the prospect at least in theory of broader and more inclusive conservation frameworks and practices discourses on the value of heritage have ancient roots and in a western european philosophical tradition are often based on wellestablished ideological positions that characterise the purpose and power of the arts more broadly as innately beneficial making a positive contribution or having a negative impact 13 the perceived dichotomy between the intrinsic and instrumental effects of heritage arguably obscures a more nuanced discussion on the complex interplay between coexisting values the nature and role of values in heritage policy and practice have been interrogated by a growing body of critical heritage scholarship emerging alongside the international and national developments in heritage policy described above critical heritage studies have foregrounded the contextual relational nature of heritage 1415 questioning how heritage is identified legitimised and mobilised 16 17 18 the idea that values are inherent in the fabric of a building or other material a principle that characterises many conservation instruments has been critiqued by critical heritage studies scholars who highlight that heritage is embedded in and a product of social and political processes 19 20 21 these debates have led to a more nuanced response to the things of heritage that integrates different aspects of significance 152223 scholars of critical heritage studies have also explored how meaning and values are formed and expressed emphasising that values are fluid and dynamic expressions of continuous processes of valuing 14 18 not definitive or singular but plural and liable to change or evolve in response to the wider context and the practical performances 19 associated with their generation heritage professionals and conservation practices are identified as active participants within these ongoing processes of negotiation and interaction 11824 these new perspectives on value and the processes of valuing have been raised alongside more practical questions such as what a valuesbased approach to culture resource management might look like 25 and what the validation of multiple conceptions of value might mean for conservation practices that are rooted in processes which involve the fixing of meaning and value 26 values not only determine what is prioritised or conserved as heritage and how but also who gets to participate in those processes in common with many other countries community participation and social values are increasingly prominent in the heritage policies of the uk nations but the implications have been slower to filter through into daytoday practice despite some progress in recent years heritage is principally a field in which specialist practitioners and decisionmakers consult with local people and facilitate their involvement 27 4628 there are exceptions but in many situations communities are talked to rather than listened to about the significance of places that they are familiar with and value 29 scholarship from critical heritage studies has highlighted the contradiction between policies of increased community participation and the established reliance in practice on expert judgements and professional authority 3 30 193132 critiquing heritage and conservation practice as reproducing dominant power and knowledge hierarchies what smith terms the authorised heritage discourse 19 however there has also been recognition that responding to value as multiple dynamic and contextual presents practical and theoretical challenges for practitioners working within institutions and systems that are based on established principles for conservation practice 126 a key problem that has been identified within both critical heritage studies and international heritage management debates is the absence of appropriate methods for the assessment of social value in real world contexts 3 4 14 24 33 34 without appropriate means for practitioners to understand and evidence the social values of the historic environment they remain invisible in official assessments of significance avrami et al note that i n order for conservation planning processes to center on and take into deeper consideration the multitude of social values we need to develop better tools and methods for the assessment of cultural significance 24 with the notable exceptions of the edited volumes from sørensen and carman 35 and more recently madgin and lesh 36 methods have received relatively little attention to date from within critical heritage studies nonetheless alternative qualitative methods have gradually emerged especially from countries with significant indigenous populations such as australia 1 3 3337 38 academics have successfully applied collaborative approaches that centre community knowledge in a variety of heritage studies contexts 39 40 41 42 43 these studies have established the strengths of using participatory methods in research with contemporary communities and have identified them as fruitful avenues for exploring social values 4 but they have not explored how these different methods enact and produce different knowledges this paper addresses the current gap in the academic literature on the work that methods do in values assessments and how they operate in context in keeping with critical heritage studies scholarship in this study values are understood as dynamic and plural contextualised expressions of ongoing social processes of valuing the study draws on the experiences and findings of a social values assessment for cables wynd house a 1960s brutalist block of flats in edinburgh scotland which is still occupied and in use according to its original design cables wynd house was selected as a case study within my doctoral research 44 because the assessment was expected to provide critical insights on the implementation of rapid participatory methods in complex social and environmental contexts in addition cables wynd house was listed as a nationally significant building in 2017 in scotland buildings are listed based on an assessment of their special architectural or historic interest 45 a continuation of earlier policies that reflect the parameters of the relevant legislation 46 having been through a formal listing process relatively recently the case study offered the scope to explore whether that process or the buildings listed status has contributed to the social values and the extent to which the conservation priorities identified in the listing are congruent with the values expressed by residents and other communities through the cables wynd house material i explore how a range of rapid participatory methods provide different opportunities and ways of knowing looking at the assessment findings i show that participatory methods and collaborative approaches can provide nuanced and contextualised understandings of the social value of built heritage surfacing diversity dissonance and complexity the variety of communities and values identified and the ways in which people experience cables wynd house as a place and as a focus for heritage conservation also highlight how social values can diverge significantly from professional assessments of value by looking at the methods comparatively and how they operate in combination i demonstrate that method choices are not merely neutral technical decisions they produce different types of knowledge and actively shape the resulting understandings of value this is an important insight of significance for academic research on heritage values and for conservation and heritage practice in the following sections i first introduce the cables wynd house case study and the methods that were adopted in the social value assessment this is followed by a description of the results of the assessment i then comparatively discuss the understandings achieved through the different methods applied in the study and how the assessment approach was adapted to the specific context demonstrating the flexible and responsive approach to methods that this type of research requires the paper concludes with some reflections on the practicalities of applying multimethod participatory approaches to understand the complex and dynamic social values of built heritage arguing that wider adoption of these approaches and incorporation of the resulting knowledge within conservation and heritage management has the potential to generate more inclusive and socially relevant forms of practice case study site and methods cables wynd house also known as the banana flats on account of its distinctive bend is located in the kirkgate area of leith edinburgh it is embedded in a complex and dynamic urban context both socially and environmentally leith is a part of edinburgh that has been shaped historically by the presence of the docks port and industrial manufacturing today leith is a culturally diverse area of housing and light industry with good transport links to the centre of edinburgh according to the 2011 census significant percentages of the population were born outside the uk and selfidentify with ethnicities other than the majority white scottish or british including polish and asian asian scottish or asian british 47 leith also encompasses some of scotlands most deprived areas when it comes to indicators for income employment education health access to services crime and housing the scottish governments index of multiple deprivation indicates that the data zone including cables wynd house is within the 5 most deprived data zones in scotland 48 in the following sections i first introduce the cables wynd house case study and the methods that were adopted in the social value assessment this is followed by a description of the results of the assessment i then comparatively discuss the understandings achieved through the different methods applied in the study and how the assessment approach was adapted to the specific context demonstrating the flexible and responsive approach to methods that this type of research requires the paper concludes with some reflections on the practicalities of applying multimethod participatory approaches to understand the complex and dynamic social values of built heritage arguing that wider adoption of these approaches and incorporation of the resulting knowledge within conservation and heritage management has the potential to generate more inclusive and socially relevant forms of practice case study site and methods cables wynd house also known as the banana flats on account of its distinctive bend is located in the kirkgate area of leith edinburgh it is embedded in a complex and dynamic urban context both socially and environmentally leith is a part of edinburgh that has been shaped historically by the presence of the docks port and industrial manufacturing today leith is a culturally diverse area of housing and light industry with good transport links to the centre of edinburgh according to the 2011 census significant percentages of the population were born outside the uk and selfidentify with ethnicities other than the majority white scottish or british including polish and asian asian scottish or asian british 47 leith also encompasses some of scotlands most deprived areas when it comes to indicators for income employment education health access to services crime and housing the scottish governments index of multiple deprivation indicates that the data zone including cables wynd house is within the 5 most deprived data zones in scotland 48 the kirkgate development that includes cables wynd house was one of several large public housing developments that were constructed in leith between 1963 and 1965 49 following slum clearance programmes the house contains 212 flats laid out over ten stories accessed via communal landings and with private balconies to the rear it is owned and managed by edinburgh city council the residents being mainly council tenants with a small number of owneroccupied flats in january 2017 following a period of public consultation cables wynd house was added to the national list of buildings of special architectural or historic interest at category a outstanding 50 the statement of special interest cited reasons related to the design which is in the new brutalism style and reflects the then emerging theoretical interest in community planning using external access decks as a way of recreating the civic spirit of traditional tenement streets 50 as well as its architectural interest the statement of special interest notes that the building and its location have frequently been used as subjects for photography and filming and feature in irvine welshs novel trainspotting 50 the social values assessment for cables wynd house discussed in this paper was conducted principally over a period of six months and adopted a rapid participatory approach applying a mixture of qualitative methods that are principally drawn from ethnographic practice the study began with observational techniques including behaviour mapping drawing a rough plan of the location and recording what was observed the behaviours that were displayed at different places and how people moved around the site 37 observation was also conducted during subsequent onsite activities which were carried out during repeated daily visits many ethnographers emphasise the importance of shared practice in producing understanding 51 but davies argues that the nature circumstances and quality of the observation is also key 52 such attentive observation not only sensitises the researcher to the social and environmental context but can also help in identifying areas for further enquiry through other methods and suggest future research directions 53 in this case the inperson and onsite activities were supported by online observation of public participatory media posts related to cables wynd house and a review of the documentation and publicity surrounding the listing process in january 2017 the study applied a combination of participatory and cocreative research activities the approach taken was to engage with local authorities and community groups as an initial point of contact and to reach out to local residents and tenants through them semistructured interviews were conducted early in the research period with heritage practitioners council officials and representatives of local organisations and then later in the research period with tenants all semistructured interviews were conducted onetoone and inperson and one incorporated a walk through the area surrounding the house the semistructured format was chosen to allow for a relatively freeflowing discussion and mutually engaged exchange from which a depth of understanding can be achieved 52 given the large number of people living at cables wynd house a structured interview technique was also proposed following the approach described by taplin et al 37 a short six question interview format was developed to be conducted quickly either facetoface or by selfcompletion the emphasis was on openended questions to provide scope for qualitative responses a folded a4 leaflet containing basic project information and the six questions was distributed to all the flats in the house the same questions were used subsequently for facetoface interviews with people passing through the public areas of the house and gardens and on the street to the front of the building participants in facetoface interviews were a mixture of tenants local residents and visitors as well as the individual participatory interview methods group activities were proposed to explore how the interactions and negotiations between individuals shaped the values being expressed although there has been an active residents association for cables wynd house in the recent past there was not one in place at the time of this study however there are several organisations in the immediate area providing community spaces and services which offered alternative opportunities to connect with existing activities and social groups following enquiries at a local community centre it was possible to trial a photoelicitation activity 54 working with a group of older people living in the area this activity took place over three consecutive weeks each of the sessions lasting one to two hours the first week was a group meeting at the community centre to introduce the research and agree together how we would arrange the activity all group members were invited to participate and five selfselecting volunteers were willing and able to do so some of the participants were more familiar with cables wynd house than others but none were present or former tenants the following week the participants met to take photographs and i accompanied them participants were asked to focus on things that they felt were significant about the building or the wider area we visited the communal areas of cables wynd house as a group and then split up to explore the surrounding area individually or in pairs before reconvening the third week the group met at the community centre to share and discuss the images the participants had taken each participant selected around 10 of their photographs to share and speak about afterwards with the agreement of the group members a number of the photos were selected and printed as a3 or a4 colour images and displayed on two of the wall mounted noticeboards in the main entrance vestibule of cables wynd house the photo exhibit was left up for five days with a comments sheet and i spent a couple of hours on site on the first and last day to take comments inperson cables wynd house in the recent past there was not one in place at the time of this study however there are several organisations in the immediate area providing community spaces and services which offered alternative opportunities to connect with existing activities and social groups following enquiries at a local community centre it was possible to trial a photoelicitation activity 54 working with a group of older people living in the area this activity took place over three consecutive weeks each of the sessions lasting one to two hours the first week was a group meeting at the community centre to introduce the research and agree together how we would arrange the activity all group members were invited to participate and five selfselecting volunteers were willing and able to do so some of the participants were more familiar with cables wynd house than others but none were present or former tenants the following week the participants met to take photographs and i accompanied them participants were asked to focus on things that they felt were significant about the building or the wider area we visited the communal areas of cables wynd house as a group and then split up to explore the surrounding area individually or in pairs before reconvening the third week the group met at the community centre to share and discuss the images the participants had taken each participant selected around 10 of their photographs to share and speak about afterwards with the agreement of the group members a number of the photos were selected and printed as a3 or a4 colour images and displayed on two of the wall mounted noticeboards in the main entrance vestibule of cables wynd house the photo exhibit was left up for five days with a comments sheet and i spent a couple of hours on site on the first and last day to take comments inperson different communities and multiple values cables wynd house is a place of residence employment and a social hub council staff advised that the flats different communities and multiple values cables wynd house is a place of residence employment and a social hub council staff advised that the flats are normally almost all occupied although there has been an increased frequency in turnover the research identified a number of communities of interest identity and location for whom the house is of significance these included current and past tenants their friends and relations people born and bred in leith andor identifying as leithers and younger people including those making use of the park and basketball court situated to the rear of the building there are some communities for whom the house is principally of significance for reasons closely aligned to the listing criteria this was reflected in comments from some respondents and images and comments posted online design and aesthetic factors were also mentioned by some participants as supporting other social values as is reflected in the discussion below first and foremost the house is experienced as a home and for the most part a place of safety and belonging since it was constructed in the 1960s it has been a place of residence for many hundreds of people some tenants move into the house after being in temporary accommodation or homeless one man who responded to the questionnaire indicated that his strongest memories were of his first night staying in the house having been homeless for some time it was a great relief despite having no furniture at all although there may be a tendency to think of a 20thcentury concrete building as modern and relatively recent there has been more than enough time for three generations to have grown up living in or around the house during the study various multigenerational or family connections were mentioned for long term residents there were memories of their own childhoods and bringing up their children in the house there were intergenerational connections involving nonresidents as in the case of one young woman who said my aunts lived here over 20 years ive visited regularly all my life there were also instances of multiple generations living separately in the house for example one resident of 20 years indicated that my daughter stays here too one resident viewing the photo exhibit said nan grew up here me my motherinlaw a lot of history in other contexts three generations of association might be expected to lead to memories attachment and value but this multigenerational connection seems to have passed largely unremarked upon in the social housing literature perhaps because of the individual nature of tenancies however in this case family history was important in how the house was viewed and valued in addition to the building operating in its primary function as housing it is also a hub for and generative of numerous social networks relationships and interactions between tenants local residents staff and visitors these relationships and the sense of community are central to how the house is valued and for those with an active social network support feelings of safety and belonging however as participants reflected these values and experiences varied between people and over time one interviewee indicated that everyone knows everyone but reflected later that people in here find it quite lonely others felt the community spirit had declined since their early years in the house as their children grew up and tenants changed with a sense that today people are not encouraged to try and meet and talk this suggests that being connected to everyone is limited to within particular social groupings or contexts it was also apparent that the physical space itself shapes these social interactions participants spoke about talking to people on or from balconies but also mentioned the absence of social opportunities or physical spaces for interaction visitors also commented on the fact they did not see many people in the communal areas when they were in the house actually when we were in the flats was sort of like a ghost town as the above suggests the feelings expressed towards the house were complex and mixed at times strongly expressed and at other times more equivocal the daytoday experiences of living in the house prompted nostalgic memories of time spent with family members alongside frustration anger or resignation over the management of the property and realities of living in close proximity to other people participants mentioned disruptive works in the kitchens mice getting into the flats broken heating and noise from neighbours or the basketball court a few people had experienced violence or disturbances that had left them feeling unsafe in the house as in any residential area it is the behaviours of their immediate neighbours that impact most directly on residents tenants tended to characterise the house according to their landing for example never had it drug dealing on my section of the landingquietest bit participants were often explicit about being from or wanting to live in leith with comments such as lived in new town another area of edinburgh ten years and here five years wish i had spent that time in leith born and bred in leith wouldnt want to be anywhere else these expressions of identity belonging and attachment contrast with feelings of aversion and examples of participants distancing themselves from the area or the house due to what one participant referred to as the trainspotting stereotype a reference to the drug addiction and economic depression described in irvine welshs book and the film of the same name sometimes these contrasting feelings were expressed by the same respondents at different times depending on the specific experiences places or identities being foregrounded in the discussion for example i was here a lot while young hasnt changed a lot still a nice place to be and then later people are stuck here forever never going to get out people came here with young children want to get out and have a garden kids cant get out and play disabled kids cant keep an eye on them when up high i have a young baby now and eventually will get out the degree to which the house is perceived to be receiving care whether from the council or the tenants affects how it is valued while comments were principally concerned with the physical appearance of the house they reveal feelings that go beyond the present physicality to reflect lived experiences and social relations past and present for example the issue of cleanliness was referred to when discussing the decline in community spirit tenants used to clean the building wash the landing every day for a week and then passed on to the fifth flat and on like that and clean the stairs between the landings once a month although experienced in the context of a specific building or neighbourhood studies have shown that changes in social cohesion and neighbourly reciprocity of the sort described are societywide issues 5657 the links being made between cleanliness and behaviour suggest that clean and cared for are experienced and understood not only as material matters but as analogies for expressing a general view of the social order 58 perceptions of the building are therefore influenced in part by how respondents are positioned with regard to the social structures and behaviours that they associate with the house there was a high level of awareness among people contacted as part of the study that the house had been listed with responses ranging from interest to incredulity while most indicated that the formal status had not changed their feelings towards the site building on the point above some people expressed a disconnect between the interest taken in the building and the attention paid to residents interests and priorities the queen has a listed building but does she have problems with heating like us some respondents also associated the listing with a perceived lack of maintenance since the new status it has gone downhill drastically council are hanging back on repairs however for some tenants the design features supported their attachment to the house from the outside the first impression is not so good but when you go inside and see the design of the flats if into design then you change your mind this same respondent referred to the building as iconic and said i feel privileged fortunate to be in it while several people responding to the photo exhibit described the house as unique against the backdrop of a proposed listing pendlebury et al 55 explore how the neighbourhood of byker in newcastle is valued by residents and professionals and the potential impact of the listing they conclude as seen here that the listing itself was not an especially important issue barring concerns about future improvements to the building or marginal benefits communities are collective and therefore relational while a simplified community identity may be presented externally membership is more accurately a complex and evolving negotiation 59 the contextualised nature of community membership and identity was apparent in this case with the residents of cables wynd house manifesting as a heterogeneous group and the house as multiple microlocations experiences were highly differentiated between groups and individuals impacting on how people valued the house and felt connected to specific places the lack of a functioning residents association is also suggestive of a degree of fragmentation within the wider tenant community participant responses indicated an awareness of this diversity and dissonance but the degree to which they aligned themselves with groups values and behaviours depended on contextualised identities and experiences as an attribute community spirit depended largely on personal experiences and networks of active relationships some people felt there was a greater sense of community in the past for others it was a positive aspect of their current experience or thought to be improving yet it was evident from other comments that in practice some people and groups may be isolated or excluded this isolation could be physical or embedded within concepts of community and place for example values of community belonging that emphasise being born and bred locally could operate to exclude other communities and experiences in an area known to have experienced significant inmigration exploring the range of experiences and views of the physical social and emotional environment of cables wynd house including seemingly incompatible or opposing values and practices was important in revealing how values and understandings of place were operating within the particular context although the house has a much smaller body of residents than the byker housing development the observations of differentiated complex and contradictory values in this case mirror the findings of pendlebury et al in their study 55 also taking byker as one of his cases malpass 61 expands on some of the challenges inherent in taking occupied council housing and valuing it according to formal listing criteria one of the critiques he identifies is that listing tends to place heavy emphasis on the building itself as an object of importance in itself abstracted from the context in which it was created and separated from the people who use and interact with it as was found in this case improvements to the physical environment may not be experienced as care and attention if lived experiences more broadly are of social disruption and disregard it follows that preserving the social values of home and belonging depends on more than maintaining the structure it requires an understanding of and support to the social processes associated with the building and the communities that call it home 61 discussion methods as ways of knowing the various methods used in the cables wynd house assessment engaged different groups and enacted different sorts of knowledge resulting in multiple and diverse understandings of the house observation and behaviour mapping helped to build an understanding of the spatial context the mapping was not limited to the public areas of the house but extended to include the surrounding area the locations of local services where people gather and the routes taken between areas this revealed how people actively engage with and construct the landscape through practices that do not necessarily follow planned uses of the space 62 not all practices or interactions can be readily observed either because of what they are or when and how they take place as one womans response to the photo exhibit indicated time of day and weather can also impact on behaviours the photo exhibit has not captured the true meaning of the flats ive been here two years friday or saturday night or a sunny day and that park will be full of people drinking i can hear and see them from my balcony differences between observation and the understandings gained by other methods can also suggest areas for further investigation 53 for example during visits to the house i regularly observed people working on the volunteer gardening project and cleaning or maintaining communal areas but interview responses reflected a perceived lack of care and attention to the house an area of dissonance that was brought into particular focus through the responses to the photo exhibit similarly inperson observations can evidence activities or communities that may be absent from the discussions or choose not to engage in the research activities structured and semistructured interview methods were critical to making sense of the house and exploring or understanding observed activities after securing permission to access the communal areas of the house discussions with city council and historic environment scotland staff familiar with the management arrangements and listing process provided useful contextual background for the study the subsequent interviews with tenants and local residents highlighted the detailed and distinct knowledge held within communities although interviews were based around prepared questions during the discussion respondents frequently developed new ideas or suggested new avenues for enquiry on occasion respondents shared experiences and memories that related to past or concurrent identities at different times in the interview this resulted in seemingly contradictory statements which were not resolved or clarified relative to one another but which emphasised the dynamic multiplicity of values associated with the house by drawing on the material from multiple interviews it was possible to gain an understanding of the range of experiences encompassed within or across communities the selfcompletion rates for the questionnaire posted to the flats were very low with less than 1 of leaflets returned however the two responses received each reflected very different experiences of residency one highlighting feelings of safety after being homeless for some time the other recalling disturbances and being woken at 4am by a junkie looking for a fix edinburgh city councils current strategy is to prioritise homeless tenants for housing in cables wynd house but the questionnaire response was the only time that someone selfidentified as formerly homeless or specifically mentioned that past experience this suggests that the opportunity to respond anonymously provided a safe space to share this memory as was anticipated the inperson approaches for structured interviews had a much higher response rate 63 the experience of being on site and speaking to people directly also contributed to my understanding of who was present how they were using the space and why negative responses to inperson requests for participation were themselves revealing identifying absences and potential challenges to engaging people in other research activities information from semistructured interviews with staff from the city council suggested a relatively small number of tenants were nonenglish speaking however my inability to engage with nonenglish speakers was a limiting factor in over 10 of the structured interview requests made inperson this resulted in some recognised gaps in participation which were highlighted in the assessment report acknowledging the inevitably partial nature of the assessment findings was important as focusing only on what is known risks reinforcing existing gaps and silences identifying at least some of the realities that are excluded also underlines the openended and contingent nature of values assessment an appreciation for which could be critical when considering the findings as part of future management actions the photoelicitation activity engaged participants with the multisensorial aspects of being in place and moving through the area 64 as they captured images that conveyed aspects of the house or surrounding area that were of significance to them the group members engagement resulted in a selection of 54 images that were then reviewed together the existing familiarity between group members and our shared experiences of visiting the house resulted in a freeflowing discussion during which people made observations about the location how places had changed and personal or family connections to the area participants who had initially indicated that they had only passing familiarity with the house shared detailed knowledge of the area and in some cases of the house as well respondents not only spoke about what was in the pictures but also things that were not visible past experiences and absences the exchanges between group members demonstrated how interaction and negotiation between individuals shapes the values being expressed and were also revealing of different values or associations two similar images of a communal corridor were described as showing variously • the pride they the tenants took in their area bright coloured doors no rubbish to go out • the sameness and the similarity of matching doors down the corridor viewing one anothers photos began to break the frame 65 of taken for granted views opening up more reflective discussion for example this exchange in response to a photo of the communal balcony with the sunlight coming in through the windows onto a shiny floor the subsequent photo exhibit in the communal vestibule of the house further enhanced the depth and range of engagement revealing important areas of dissonance as in discussions with the group members people were observed identifying places they knew and there was some evidence of people having physically touched or drawn on the images illustrating how a physical artifact or image can be used to prompt interaction and reflection during the group discussion the photographer was able to explain the intention behind their image and the experience connected to it constructing a narrative beyond what the picture showed 66 when the images were displayed in the photo exhibit they were left completely open to interpretation and were used by respondents to produce and represent their knowledge selfidentities experiences and emotions 67 responses to how the building was shown in the images and perhaps also the range of pictures taken and selected for the respondent 310 as i say its a few years since i was there but then it was all graffiti and horrible respondent 312 thats remarkable actually the whole building there was not one bit of graffiti that i could see in the whole building the subsequent photo exhibit in the communal vestibule of the house further enhanced the depth and range of engagement revealing important areas of dissonance as in discussions with the group members people were observed identifying places they knew and there was some evidence of people having physically touched or drawn on the images illustrating how a physical artifact or image can be used to prompt interaction and reflection during the group discussion the photographer was able to explain the intention behind their image and the experience connected to it constructing a narrative beyond what the picture showed 66 when the images were displayed in the photo exhibit they were left completely open to interpretation and were used by respondents to produce and represent their knowledge selfidentities experiences and emotions 67 responses to how the building was shown in the images and perhaps also the range of pictures taken and selected for the exhibit identified a disconnect between how the house looked compared to how it was experienced for example several people responded with comments such as it looks a lot different to how it looks when youre in it looks very clean these comments resonated with interview responses in which people had focused on cleanliness not only as a physical or practical concern but as an expression of community spirit in the house combining multiple methods not only supports a greater depth of understanding but can also inform the emergent research process the combination of structured and semistructured interviews served to identify common touchpoints and supported the interpretation of observations or other activities the understandings and knowledges each provided usefully complemented one another the structured interviews suggested potential areas for discussion in the more detailed and indepth semistructured interviews as well as an indication of how widespread the specific experiences and associations mentioned by the semistructured interview respondents were although the response rate to the selfcompletion questionnaire was low a couple of people did bring the leaflets to the semistructured interviews showing that they had helped raise awareness among residents that the research was taking place the impact of sequentially implementing methods is also seen more directly in the outputs of the photoelicitation being taken forward into the photo exhibit while the sequencing was partly practical as it took time to identify people willing to participate in activities starting with more general exposure was helpful in building up familiarity with the site key individuals and the wider context which proved to be important when it came to implementing more engaged methods and interpreting the resulting materials towards the end of the assessment process the draft findings were shared with participants and professionals responsible for the conservation and management of the house a poster summarising the key findings was also developed to provide feedback to tenants and visitors who may have observed or participated in the research but not provided contact details these activities were part of my accountability to the original knowledge holders but also intended to increase awareness of the diversity of values associated with the house and the different ways in which it is experienced as a place beyond its observable functions and physical form providing important social context for any future conservation actions methods in context working with multiple methods and combining different types of method generated a plurality or a breadth as well as a depth of understanding while at times the participant engagement led to seemingly contradictory or opposing statements the aim was to obtain a variety of interpretations rather than seek consistencies 52 as a result the assessment built up a complex understanding of the diversity of social values for the range of communities with interests in cables wynd house the methods assemblage 68 used in the assessment was able to reveal and accommodate this complexity more than a cluster of methods this approach looks beyond methods as techniques to also consider how they are embedded in dominant epistemologies and hierarchies of knowledge systems for reporting and recording and complex material individual and organisationalcommunity relations 68 these are all factors that affect how methods work in different contexts and when implemented by practitioners with different profiles in this case the fact i was working alone on the assessment meant personal attributes such as gender and language impacted on engagement while i was careful to consider my positionality it was often in the processes of reflection and interpretation that unconscious biases or gaps became apparent for example the choice of terminology was flagged in my draft report where there might be implicit negative connotations in referring to cables wynd house as an estate as opposed to the more neutral development or building such reflections served as reminders that although the report was based on participatory methods and included community voices the process of analysis interpretation and writing inevitably privileges and is shaped by a researchers theoretical and epistemological commitments 69 working with others who have complementary but diverse specialisms can assist in identifying and compensating for unconscious bias as well as supporting a multimethods approach 70 37 71 drawing on a range of methods means that the research process can be responsive to dynamic contexts and developing understandings in anticipation of the complexity of an innercity context with relatively high levels of diversity and transience the proposed approach for the cables wynd house assessment was to deploy rapid participatory methods over an extended period in practice both the overall amount of time and duration of the study had to be increased to obtain sufficient material for the assessment this was principally due to challenges in identifying community structures and engaging participants in the methods given the social context and the lack of a residents association for the house it was expected to be challenging to engage participants particularly in more collaborative activities or those requiring repeat engagements following the low response rates to selfcompletion questionnaires plans were adapted and inperson structured interviews were scaledup referrals by formal gatekeepers made it possible to conduct semistructured interviews with a small number of tenants as a site embedded in daytoday life it was planned to work with residents to develop photo or written diaries of their daily engagements with place through notices posted in the communal areas of the house and observation in the wider area i identified several community organisations holding events for local residents either at the site or in the immediate vicinity it was possible to attend some of these community gatherings and they provided opportunities for engagement however it remained difficult to identify and engage the informal personal networks that were described by interview respondents as contributing to their sense of community online observation and mapping the local area gave me an understanding of some of the local amenities enquiries about possible collaboration initially received positive responses from two community support organisations in the area one working with young people and the other with women unfortunately practical constraints competing priorities and limited resources meant that the planned research activities could not be arranged with those groups while visiting a local community hall i saw an activity advertised for older residents interested in photography unlike the other organisations that i had approached i was able to engage directly with group members and the collaboration did not require support from the coordinating organisation or divert scarce resources and time from other priority projects the proposed activity aligned well with the groups existing activities and the members agreed to focus on cables wynd house resulting in a productive series of exchanges that also generated the material used in the photo exhibit at the house although there were some initial assumptions based on existing documents about potential communities and the types of values and practices associated with the house that might be significant the outcomes of the social values assessment were not predetermined the assessment was a process of exploration undertaken together with the participants like all sociallyengaged research it required a flexible responsive and reflexive mode of practice working with emergent understandings and evolving contexts whether a planned method could be implemented depended on a combination of factors not least the willingness and availability of potential participants networks of relationships and the wider context as with all participatory research i had a responsibility to ensure the process was conducted ethically and to take cognisance of the potential impacts that the activities or findings may have on the individuals and communities involved when assessing social values there is always the potential for activities to surface potentially distressing or emotional issues tensions or conflicts for participants the memories associated with historic places are not necessarily the nostalgia of good times past 72 this understanding combined with the emergent nature of the research process meant that the social values assessment demanded an everyday ethics 73 a continuous process of selfreflection and dialogue with participants in which consent is renegotiated and reconfirmed throughout the process and in response to the specific context as this study shows working with methods in context is not a purely technical matter it implies new ways of thinking about knowledge production and of working with the individuals and communities who are expert in their own relationships to place the history of current conservation practice has been dominated by western european thinking and positivist traditions that emphasise scientific processes with professional judgements presented as objective and constant adopting more participatory responsive and reflexive methods unsettles this established reliance on professional judgements and changes the role of the practitioner from being the only expert and custodian of built heritage while this shift in power and authority brings challenges such approaches can result in new shared understandings of the range of values associated with built heritage ultimately supporting its future conservation conclusions the cables wynd house study is one example of how a multimethods participatory approach can be applied to explore the variety of communities and range of social values associated with built heritage there were unexpected challenges and adjustments required throughout the process but through working flexibly it was possible to implement a range of participatory methods the understandings that resulted from the assessment depended on the combination of methods and an iterative close examination of the resulting material 69 this depth of knowledge could not have been achieved through nonparticipatory deskbased research alone and differs significantly from professional assessments of value as detailed in the listing documents it was apparent that people were aware of the buildings status as nationally significant but the values that they associated with the house were rooted in their daytoday experiences relationships and intimate knowledge of the place over time that said there is a relationship between the formal heritage processes and the social values identified the architectural features that principally underpin the listing do impact on how the house is valued just as the experiences of the house as a place of home community and connection which are central to how people value the building are also reflected in the original design intention the case study also shows how conservation and management actions focused on the physical fabric have the potential to strengthen or undermine these social values depending on how they resonate with peoples other understandings and experiences of place each method provided insights and generated material that taken together informed the overall understanding of the social values associated with the house however the methods were not simply alternative means of achieving the same understanding as was apparent for example in the differences between the knowledge shared during an individual semistructured interview when compared to the negotiated understandings and different views that emerged from the photo group discussion the different methods provided different ways of knowing with different knowledges negotiated and produced through the process the multimethods approach was therefore critical in surfacing and understanding the complexity and range of values associated with the house furthermore the knowledge generated through the different methods did not straightforwardly make up different parts of a coherent whole rather the diverse lived experiences of the building and the varied temporal spatial and social connections that were enacted through the different methods revealed a diverse and potentially contradictory multiplicity of realities 75 working with a combination of qualitative methods in a methods assemblage 68 allowed for this multiplicity nuance complexity and dissonance to surface within the assessment process and held those tensions without falling into incoherence or requiring their resolution through an artificial consensus as mol and law observe this messy complexity is often elided within official reports with the objective tone that typifies much academic and professional writing authoritatively establishing what is known leaving limited space to reflect on the more unexpected and uncertain aspects of our knowledge 76 another advantage of adopting a mixture of qualitative methods is that they provide multiple avenues for participation differences in engagement across the methods proposed or adopted in this study highlights that methods are not equally accessible or appealing to participants such differences also emphasise the need for critical reflection on what individual methods might not reveal or who might be unintentionally excluded from the process as well as flagging practical considerations regarding where when and how people are willing and able to participate as critics have argued participatory processes do not inevitably result in greater inclusivity empowerment and sustainability they can be coopted or coercive reinforcing existing practices and values rather than recognising the issues knowledge and spaces claimed by communities themselves 7778 participatory processes designed to engage more marginalised groups are also open to capture by the more advantaged and empowered middle class who are familiar with the processes and terminology used in policy consultation 79 recognition of and specific efforts to overcome power differentials and existing inequalities including critical selfreflection on personal positionality values and biases are therefore essential to these processes all action in the field of conservation is affected by an appraisal of value 2 perceptions of value determine what is done and how as well as who decides and based on which forms of knowledge in a scottish context the values that can be considered as part of a listing process are limited to assessments of architectural or historic interest as determined by the underlying legislation nonetheless public participation is an increasingly important part of heritage conservation as professionals seek to balance the physical preservation of historic fabric with contemporary uses and values in this context the qualitative participatory methods applied in assessing social values and the nuanced understandings of the relationships between people and place that result are arguably extremely useful and likely to become ever more relevant in the conservation and management of built heritage however bringing the knowledge resulting from a social values assessment into conservation practice is not without its challenges determining how pluralistic understandings of value can be incorporated into practical heritage management and conservation contexts remains probably the most significant issue facing contemporary heritage management and policy 26 as macdonald observes professionals are only beginning to grapple with the implications for conservation in terms of which values take priority and how they are conserved 80 this case study has demonstrated that a mix of rapid qualitative participatory methods deployed in a flexible responsive reflexive and ethical manner is practical within real world conservation and heritage management contexts however to be most effective participatory methods need to be embedded in genuinely peoplecentred heritage management and conservation processes this means going beyond consultative approaches and engaging people in invited spaces 81 to recognise other forms of knowledge and expertise regarding what makes built heritage valuable jones and yarrow 8283 have described the collaborative processes and negotiations that take place between conservation practitioners but community expertise and social values are rarely included in these processes working with participatory methods and engaging in truly participatory processes is an important step in opening up heritage and conservation decisionmaking making otherwise hidden professional judgements and values more visible doing so also offers the potential for more inclusive and socially relevant forms of practice to emerge the result is a more complex but also a far richer understanding of our historic environment and the contribution built heritage makes to peoples lives

this paper explores the role participatory methods play in understanding the social values of built heritage including peoples sense of identity belonging and place it is based on research in scotland where as in many other countries there is an increasing emphasis on contemporary significance and public participation within domestic heritage management frameworks the paper draws on the experiences and findings of a social values assessment for cables wynd house a brutalist block of flats in edinburgh that was listed in 2017 through the case study assessment conducted over six months in 2019 cables wynd house is manifested as a multiplicity of connected realities diverse experiences and microlocations the participatory methods reveal interactions and tensions between the architectural design and aesthetics of the building and participants lived experiences and connections the article argues that the mix of participatory methods provide different opportunities and ways of knowing surfacing diversity dissonance and complexity it highlights that participatory research is a collaborative process requiring a flexible and responsive approach to methods the paper concludes that participatory methods and collaborative approaches can provide nuanced and contextualised understandings of the social value of built heritage which can complement but also diverge significantly from professional assessments of value wider adoption of these methods and the resulting understandings into the management and conservation of built heritage would support more peoplecentred inclusive and socially relevant forms of practice

introduction the most enthusiastic discussions on the availability of data and the feasibility of appropriation by civil society and researchers immediately encountered other factors blocking advanced data practices crowd science quality in research and secondhand data usage for industry or research purposes research on open data placed in open data repositories has considered several hypotheses in this regard first data cultures connected to disciplinary issues research funding and value given to specific research practices address researchers attention and practices second any open data quality standard parameters embedded into the digital infrastructures to share data would determine usage and sharing in this regard the fair movement has set an agenda pushing the application of quality standard third the methodological difficulties in capturing the social life of open research data with some platforms providing more features to study sharing and reusing approaches than others moving beyond open data repositories to other types of digital environments promoting scholars networking and professional learning research on the researchers professional practices on social media and the related digital skills must not be left out the literature suggests that scholars have moved to social media from traditional repositories and publication in search of strengthening mutual relationships facilitating peer collaboration publishing and sharing research products and discussing research topics in open and public formats this is particularly true of increased activity by scholars on academic social networks and researchgate overall new forms of scholarship aligning with open science ideals have been characterised as open networked and social however their study moves forward through separate lines of research between information literacy studies and professional learning in networked and online spaces in fact despite the plethora of studies on scholarly practices on social media no specific research has been conducted to our knowledge on sharing open data usage on researchgate so it is not clear how researchers engage in such practices as part of their professional learning and identity moreover a preliminary exploration of current practices on data could unravel the existing literacies and spot the skills gaps as a critical piece of open science mind the gap a way forward to uphold critical data literacy in the data practices of researchers the tricky situation depicted in the previous section requires scholars to reflect upon data practices from a critical perspective emerging forms of research data literacy could be at the cutting edge aiming at an integrated reflection and action taking in higher education to provide the necessary support to faculty development from its inception the concept of literacy relates to a social activity namely knowledge that is activated in specific contexts of life or work this is particularly true when dealing with dynamic social environments like social media the visible practices undertaken by specific groups show the value given by those social and professional collectives the hidden or inexistent practices signify both a technical inability and the lack of engagement with a broader view of what developing means in this sense the open science discussions including open data infrastructures comprehension open data production and data sharing and reusage act as a context of specific professional literacy the need for knowledge and skills to operate in such contexts is not new in 2013 schneider considered generating a framework to address research data literacy some studies also referred to the need for support and coaching by the researchers to develop a more oir 471 sophisticated understanding of data platforms and practices showing basic data usage without technical support from libraries wiorog orska et al investigated data practices through a quantitative study in poland led by the information literacy association the results revealed that a significant number of respondents knew some basic concepts related to research data management but they had not used institutional solutions elaborated in their parent institutions in another eu case study conducted in slovenia vilar and zabukovec studied the researchers information behaviour in all research disciplines concerning selected demographic variables through an online survey delivered to a random sample central registry of all active researchers age and discipline and in a few cases gender were noticeable factors influencing the researchers information behaviour including data management curation and publishing within digital environments mckiernan et al studied the literature through 2016 to show the many benefits of sharing data in applied sciences life sciences maths physical science and social sciences where the advantages are related to the visibility of research relative to citations rates as a result the authors pointed out the need to support the researchers on paths to open data practices the literature has been concerned not only with detecting the skills gap but professional development programmes conducted primarily by university libraries have taken an active part in developing data literacy amongst researchers in determining data information literacy needs carlson et al noticed that researchers need to integrate the disposition management and curation of data and research activities the authors conducted several interviews to analyse advanced students performance in geoinformatics activities within a data information literacy programme given the difficulties of finding useful training resources for researchers teal et al developed an intensive twoday introductory workshop on data carpentry designed to teach basic concepts skills and tools for working more effectively and reproducibly with data raffaghelli designed some workshops to discuss reflect on and design open data activities in the specific field of online networked learning there is no documentation on whether said activities integrated research on asns asns have been primarily considered a space for informal professional learning which is frequently intuitive and misses the reference to formal public infrastructures of digital knowledge available for the scholarly work researchers move on these platforms particularly researchgate and academiaedu using the affordances provided and learning from each other however the literature also portrays the preference for traditional researchrelated activities to improve reputation due to incorrect behaviours lack of quality of the resources shared and gaming within asns overall it is necessary to understand the extent to which researchers adopt asns in appropriate ways not as a primary space but with the social purpose of sharing and reusing ords the lack of engagement or the erratic behaviour in these contexts would signal the need to develop data literacy as a complex understanding of the open science context including the appropriate usage of digital infrastructures therefore we purport here that data literacy refers not only to a technical ability but also to strategic holistic knowledge and the ability to deal with a new context of professional practice namely open science this preliminary picture is also necessary to promote libraries and faculty development services as institutional strategies to promote professional engagement learning and activism by researchers on digital platforms this research question is broad in scope and was therefore articulated into three operational questions methods this rq1 what are the characteristics of the social activity related to selfarchived open data on researchgate when compared to the social activity of the linked published research and in terms of quality rq2 is there any factor that predicts the social activity of ord rq3 do the social practices related to ord and linked publication show any patterns across specific research groups data collection instruments and procedures researchgate affordances researchgate is considered as one of the most prominent asns its main affordances encourage researcher visibility and social activity these affordances include public researcher profiles and pages access to the researchers publication through specific links generated by researchgate and the possibility of linking supplementary material such as images tables or data as is characteristic of social and professional network sites the resources cannot be browsed as in a database but are connected to the researchers profile therefore the resources selected through an algorithm connected to the researchers profilingor the other researchers profile and reputationare the hook to the curiosity and engagement of others with the information metrics researchgate collects and displays several direct metrics or metrics built upon layers of data the metrics are also classified as public or private public metrics include the number of publications number of questions and answers number of research projects opened by the researcher or in which the researcher is engaged number of reads and number of citations while the metrics are quite direct they are always calculated based on activity within researchgate namely the number of publications uploaded by the researcher or detected by researchgate reads counted as views of a publication summary clicks on a figure or views and downloads of the full texts and citations of articles within the researchgate platform the second type of metrics includes the researchgate score© a composite metric showing the researchers reputation calculated on all research elements including publications questions answers and how other researchers interact with said content particularly as followers and through views and citations researchgate metrics are aimed at stimulating social life on the platform not only complex metrics such as the rg score but also data views motivate the researcher for example to make comparisons with their evolution on the timeline and across the collective of researchers data collection procedure the use of metrics that are not public would involve requesting research scrapping moreover manual procedures would encompass low feasibility of sampling a sufficient random number of cases as a result an approach that ensures an initial economy of efforts lies with datadriven procedures through metadata extraction procedures oir 471 therefore to obtain fundamental insights on the social activity of a considerable number of users we analysed two public indicators the number of online reads and the number of citations associated with each researchers public profile the number of views and citations was adopted for the two central researchgate elements namely the ord and the linked publication the sampling procedure collecting and transforming data into the final variables included an initial procedure of web scrapping 1 conducted between november and december 2018 based on a random list of 1500 objects labelled as data the list was applied to search for 1500 ords using the software fminer after the selection the linked publications were also searched for automatically the procedure was repeated to extract the main authors profile a final data set was assembled with all the information scrapped after data polishing 399 items were removed finally 752 cases were considered at a 95 confidence level and 5 margin of error the expected sample size is 385 cases the sample in this study outperformed such values with an margin of error of ±357 finally a set of variables was created through manual analysis by visiting each researchers profile to ascertain the information retrieved variables included gender scientific domain geographical region professional position the rg score was also rechecked the metrics definitions and procedures for data extraction and conversion are synthesised in table 1 the authors collaborated with two research assistants to classify the ords and analyse agreement for the reliability of the creation of variables on a list of 6 of randomly selected cases the agreement level was absolute on gender and geographical region however the professional position required discussion on technical profiles and research practitioner aggregation which ended up in a 74 agreement cohens kappa coefficient was used to measure researcher agreement overall coded values were 066 on the basis of 31 agreements on using a code seven agreements on not using a code five disagreements representing 88 of agreement another variable built was the fair quality assessment one of the authors assessed each of the 752 ords applying the simplified fair checklist if the four fair dimensions were fulfilled a score of 4 was assigned conversely one twoor threepoint scores were assigned when one two or three of the fair criteria were met a score of 0 meant that none of the fair criteria were detected in this case the kappa coefficient was applied to 6 of the list above obtaining a value of 030 with 68 agreement data analysis the analysis encompassed an exploratory approach to data to detect and represent underlying structures in the datasets to be interpreted based on the research questions rq1 the descriptive statistics including frequencies and percentages central and dispersion robust measures were reported to provide an initial synthetic representation that led to insights on the dimensions being studied the descriptive statistics included univariate and bivariate tables with the overall social activity and the social activity characterised by ord quality and the researcher profile as for rq2 a relevant issue from the descriptive statistics was the extremely negatively skewed distributions relating to the social activity around ords and publications as a result a nonparametrical correlation was applied to explore initial relationships moreover the relevant relationships were explored through binary logistic regression the relevant response variables in this study were recoded as dummy variables taking into consideration a reference value set upon the 5 0 0 reads and citations as in any regression analysis the logit model aimed to model potential relationships between explanatory variables and response variables the aim was to model the response of reading citing or not readingciting ords according to the different researchers characteristics the quality of the ords and the social activity related to the linked publications finally for rq3 an unsupervised kmeans cluster analysis was performed to observe whether the reads of ords and linked publications generated groups of cases as expected the clustering algorithm forms groups of observations that should show similar patterns of relationship moreover to determine each clusters relevance the analysis of variance was adopted computed per variable and its resultant variance table including the model sum of squares and degrees of freedom as the variance statistics the other categorical and numerical variables in the study were adopted to study their behaviour within the clusters on the clusters generated thus the clusters yielded further information on overusage trends considering the researcher profiles and ord quality results rq1 overall social activity related to selfarchived ords compared to linked published research and quality initially we researched the distributions related to the social activity of publications and ords as reported above these were extremely skewed with cases deserving the attention of the research community most cases of ords and linked publications were never read or cited the medians around 0 highlighted such phenomena table 2 illustrates the social activity related to ords and linked publications and the quartiles mean and standard deviation showing the skewed distribution a stable relationship between publicationord reads and publicationord citations can also be obtained combined social activity with the researchers profile also showed interesting specific phenomena within the overall situation the social activity of open research data first female researchers were underrepresented in the sample having the fewest reads notably the ord reads were almost nine times higher for males the relationship between publicationord reads follows the overall pattern detected above however regarding citations the malefemale researchers related to publications come closer this situation is not repeated for the ord citations the relationship between publication and ord reads and citations aligns with the overall situation specifically the more ords published in a scientific field the more reads and citations received interestingly most ord citations come from the field of formal sciences which include maths statistics and computer science considering the open source movement we can assume that sharing scripts in programming activity is a more common practice requiring collaborative literacies than in other fields regarding the geographical regions to which the researchers institutions belong most selfarchived ords fell into the categories of western europe north america and the asian region the relationship between published ords and the social activity related to the same ord and the linked publications is again stable the more the ord gets published the more reads and citations occur with western eu and north america showing the highest levels of attention in a typical centreperiphery relationship with knowledge however it is interesting to notice some specific cases that could be shaping different cultures of collaboration regarding data in the middle east with a low number of ord publications the ord is read even as much as the linked publications even though there are no citations for the ord ord reads are even higher in the pacific region than the linked publication reads as in western europe in eastern europe there is a high concentration of reads on some publications yet in the second case the social activity connected to publication citations and ord reads is lower moreover ord citations are null the professional position variable shows higher productivity in terms of selfarchived ords for the academic midpositions with 357 out of 752 records they are followed at a distance by the assistant positions the situation is consistent for social activity academics in their midcareer positions get more reads on their publications and on their ords this is also the case for citations more importantly all ord citations computed belong to midpositioned academics remarkably assistants received almost an equal number of ord reads for a relevant fewer number of selfarchived ords finalising the data analysis reported in table 2 the researchers reputation in rg score was considered we discovered that most selfarchived ords are related to researchers with relatively low reputation nonetheless when analysing social activity related to ords we observe a slight change in the trend the highest number of reads for linked publications occurs for the researchers with the highest reputation also a relevant number of ord reads are included in this category however many linked publication reads are consistent with the lowest reputation the highest ord reads are related to scholars with a relatively low reputation the linked published citations and the researchers with a low reputation attract a higher number followed by scholars with a midreputation most ords get citations regardless of the reputation of the researchers who published them even if the ord citations are negligible it can be assumed that the researchers focus on the research they know for the social activity of open research data specific purposes however the reads and citations on ords produced by scholars with higher reputation show that this parameter attracts other scholars attention moving to the social activity related to ord quality results are displayed in table 3 the social activity in terms of publication citations and open data reads also showed little researcher attention to ord quality an overwhelming number of selfarchived ords were not compliant with the fair criteria followed by elements compliant with only one criterion at the same time only one ord reaches the top level of quality with four fair criteria moreover most citations of linked publications and ord reads were directed to low fair scores however another unusual pattern is shown in table 3 a handful of 12 articles linked to published ords compliant with three fair criteria concentrate a very high number of reads and receive 4 of the 13 ord citations in conclusion figure 1 represents the relationships between publication reads and ord reads and citations ord reads and ord citations these two relationships compared to a third variable namely ord quality the results are not particularly encouraging and confirm the intuitions emerging from the tables we observe that highly skewed distributions were most ords published and their linked publications are underseen and underused and a high concentration of social activity related to specific records the quality of the ord is also irrelevant to address the researchers behaviours rq2 factors that predict the social activity of ords the binary logistic regression on the response variable ord reads and ord citations did not yield significant models rather interesting insights nonlinear relationship independence of errors and multicollinearity were met as assumptions that support the logistic regression therefore given our studys exploratory nature we adopted the forced entry method that considered the explanatory variables theoretically identified and showed tvalues near significance levels for the ord reads these variables were quality rg score and linked publication read in the latter case the explanatory variables were transformed into categorical predictors annex published as open data respectively summarise the logit analysis for predicting ord reads and the predictors for ord citations in the case of ord reads the high aic value the nonsignificant chisquare coefficient and the negative very high pseudo rsquared index show a poor model fit and somewhat random behaviour related to ords in any case the quality 3 level and the highest number of reads on the linked publications yield a significant t value regarding the ord reads which could point to an association the more published research linked to an ord is read the more the ord attracts the attention of researchers in the ord citations the model included the scientific domain the ord quality and the ord reads converted into categorical variables at two levels while the model got better fit values the nonsignificant chisquare coefficients and the low rsquared also showed a poor model fit however some interesting relationships appeared the scientific domain of formal sciences achievement of at least three fair quality criteria and the presence of odr reads could be associated with ord citations at significant levels it can be concluded that while it is not possible to find a model for predicting when ord citations will occur there are some specific scientific domains that are moving their social practice towards acknowledging and citing the data of others as in the case of odr reads odr quality also led to citations rq3 social practices related to ords and patterns of linked publication across specific groups of researchers this question was explored through cluster analysis that grouped data points according to ord reads and linked publication reads as the most stable parameters of social activity which proved to be associated the silhouette method established three cluster as the optimal number figure 3 shows the distribution of the three clusters where despite the skewed distribution it is possible to see that the three groups display diversified patterns namely cluster 1 relates to selfarchived ords with linked publications that tend to be read more cluster 3 is made up of selfarchived ords that tend to be read more with some cases of highly read linked publications and cluster 2 shows selfarchived ords with negligible levels of social activity in terms of reads both of the ord and the linked publications the statistics computed within the cluster showed a similar distance between cluster centroids the model explained 72 of the variance the social activity of open research data table 5 shows the distribution of selfarchived ords relating to the profiles of the researchers and the quality of the published ords per cluster we can observe that cluster 2 is made up of most cases the profiles of the researchers in this cluster are consistent with the overall situation more males coming from applied and natural sciences mostly located in western eu north america and the asian region and overwhelmingly midcareer academics however when analysing reputation and the quality of the published research we find most selfarchived ords in cluster 2 published by scholars with very low rg scores these scholars tend to publish mostly lowquality ords within the secondlargest cluster which shows some social activity for linked publications related to the selfarchived ords oir 471 the situation also aligns with the global distribution and cluster 1 but it is also worth noticing that in this cluster the weight of the asian region and western europe is higher when compared to north america the rg score is more balanced with cases with a higher rg score finally for cluster 3 the trends are similar to those described above more males scientific domains of applied sciences and natural sciences same regional areas more presence of midposition academics and low quality of the ords published in this cluster some interesting trends are related to a better representation of the middle east it was also more relevant social activity found related to selfarchived ords published by scholars with a higher rg score discussion in response to the three rqs we observed that there is still undeveloped social activity related to selfarchived ords in researchgate in terms of reads citations and the quality of the published ords as their influence to engage with them we also found that the relevance of the moderating effects on ords underpins the assumption of traditional dynamics that is still stuck on new data practices finally researchgate exhibited a similar situation to other data platforms and repositories our study portrays group characteristics that may support situated values and cultures preventing or hindering quality data sharing or reuse most ords were published primarily by males from western eu north american and asian institutions with a position of academic seniority they attracted specific citations on the ords from fields that are already recognised as being dominated by males notwithstanding female colleagues were underrepresented but their publications linked to ords were cited similarly to male colleagues moreover though the research assistants showed fewer selfarchived ords than midcareer researchers the former attracted an equal number compared to the latter however the research assistants selfarchived ords get much fewer citations in this regard even if the ord citations were negligible it is related to specific research fields namely male researchers from western eu and north america in their midcareer and of higher reputation undoubtedly centripetal forces attract attention to specific research which might be linked to several factors our assumptions would be further supported by the sociocritical lens of bates who highlights the complex nature of the behaviours of researchers in circulating the ords which entail voluntary or involuntary data friction according to bates data friction is an emergent effect of the many cultures jargons and procedures adopted by the researchers in the different disciplines or groups the friction effect impedes outsider researchers from understanding what the colleagues do with data making such data unusable postphenomenological approaches might also support data friction in engaging with research objects and representations it is not the object per se that communicates its possible affordances but the relationship between the prior and present researchers experience to enable her to engage with it moreover we might consider robert mertons foundational work on sciences normative structure there are hidden rules connected to the research cultures across fields that permeate and guide researchers attention decision over topics and methodologies these cultural factors could influence researchers when focussing their attention on the most influential researchers in their fields the example of the concentration of publication reads in western and eastern europe with low ord reads and citations demonstrates patterns that follow tradition and hierarchies such information is confirmed by the prevalence of ords published by mid another factor is related to expertise and knowledge levels supported by professional networked learning consulting specific resources and recognising where the expertise can be found is consistent with the idea of intuition and selfdetermination in searching for the relevant knowledge in ones own field this is not contradictory to mertons theory those that hold power in institutional or professional groupscommunities are those whose knowledge is most relevant as for the latter factor there might be values deemed applicable across research disciplines as lee et al expressed these authors created a model based on 18 factors amongst which the most important was accessibility followed by altruism reciprocity trust selfefficacy reputation and publicity nonetheless data cultures across disciplines are based on the methodological assumption and the research topics ontological approaches borgmans indepth qualitative analysis for data practices across disciplines supports this hypothesis and our work sheds light on the quantitative differences though not on the motivations one could consider whether this situation should change should all research fields behave similarly and be prolific in opening data should humanities and social sciences work on more open data patterns to a certain extent as borgman pointed out a researcher dealing with unique cultural heritage andor a social scientist handling sensitive issues would be slower in producing and sharing their data in this regard the values and the ideology of digital and open science could be embraced differently as l€ ammerhirt and wouters and haak pointed out data sharing is strongly encouraged by policymakers in some disciplines such as physics and genomics still this concept is far less developed in other fields of research the recent existence of a field of research could also be considered as raffaghelli and manca documented for the case of educational technology even if our work did not compare the variables explored here within the context of researchgate with other contexts of ord selfarchiving like zenodo figshare or institutional repositories the literature related to these latter cases addresses a similar situation lack of ord attention sharing and reuse is common phenomenon even if there is an increasing publication trend therefore an infrastructure whose affordances are prepared to support social activity does not encompass specific changes to the researchers practices professional cultures and contextual literacies this aligns with the idea that the technical structure for opening data is embedded in complex sociotechnical ecosystems a clear example is that of ord quality observed in this study most ords did not achieve even one fair parameter within rg the situation related to the quality of selfarchived ords and related metadata could be worse than in specialised data repositories due to the lack of specific affordances addressing the appropriate presentation and findability of data sets however the very few ords of good quality published on researchgate deserved attention thus when the professional communities engage in specific social behaviour patterns the participants will adopt the technologies accordingly rather than the opposite the specific situation of groups showing advanced data practices also requires attention in a changing situation for digital scholarship to show up within social media and asns weller highlights the systems pushing effect to adopt digital means supports the idea that many researchers feel obliged to embrace the open practice and go wild on some platforms with somewhat performative practices the lack of quality of oir 471 the ords published would go in that direction moreover the openness has been emphasised disregarding the relevance of networking and being digital another fact supported by the low social activity and low quality as a result publishing open data might be a mere performative act we found that the ords published underpin new approaches to data however the lack of quality could be an eloquent expression of no concernno time to devote about the life of such objects after being published nonetheless it could also be the result of behaving as double gamers according to costa researchers struggle between pursuing the highest values of transparency and public knowledge embedded in the action of publishing open data and the lack of recognition for such an endeavour in most traditional contexts of doing science where only the final publication supports career advancement all in all there is an emerging scene that hinders scholars reflection on data practices through more holistic and critical perspectives entailing better quality and reuse the traditional profiles and social activity related to the publications underpin the assumption that there is attrition between new professional practices and the consolidated mechanisms of reputation and career advancement the need for critical research data literacy is part of a culture of pushing for innovations and getting a broader picture of what open science might bring to society in the future not the present therefore better open data quality replication and secondhand data reusage as innovative practices of open research require technical knowledge and require engagement with the policy context and with strategies to advance the quality and ethics of being an open networked and social researcher as an example we could consider the fair data principles knowing them helps the researcher publish better quality open data and understand the differences between making data circulate between asns or institutional repositories but knowing the context of generating the fair principles might imply attention to familiar patterns and languages as social knowledge connected to critical data literacy conclusions this study explored the social activity of researchers related to ords in an attempt to spot areas of conflict relating to making a professional identity as digital scholars in the era of open science as our study showed there is still a long way to go for the effective adoption of asns to share and reuse ords we considered several hypotheses relating to this phenomenon beyond digital infrastructures and the quality of the digital objects published in this regard focussing on practices and the culture supporting them leads to a discussion on sociocultural transformation and development this element addresses training as a key dimension of institutional cultures professional practice and critical literacies in terms of future research promoting such a critical approach to data practices should be considered here formal training would not be the way to balance a situation where the motivations to publish read cite and potentially reuse ords could correspond to the researchers struggle within conflictive institutional and data cultures to strike a balance between the initial formal learning activities related to institutional repositories and infrastructures for open science and the informal learning occurring in the context of asns engagement and reflective practice within professional learning communities could be explored as a possible way however it should also be considered that professional learning requires complex selfdirected pathways including all sorts of engagement with resources activities and networks to fulfil personal developmental goals into what could be considered an ecology of learning once again the institutional agendas might pressure researchers to focus on specific forms of literacy as a result researchers might resist disregarding activities when not rewarded to activism and civil disobedience it goes without saying that while formal the social activity of open research data training imposes an explicit institutional agenda that outlines the types of desired literacies a critical approach to selfdetermined data literacy in research might be connected to more informal spaces particularly activism while we found that the factors influencing data practices are relevant our research could not reach a clear relationship for all the sampled researchers and specific groups future research should explore the researchers data cultures as social contexts of data literacy development including elaborating open data and publication motivations either in institutional repositories or asns this could be done both by qualitative observational approaches and designbased research on professional learning in scenarios where the researchers skills gap predominates the impact of creating spaces of reflection and informal or nonformal learning amongst researchers could be researched as a source of grounding communication over data to move beyond the sole expression of interest on ords however in the less optimistic scenarios where scientific communities social structures exert power and impose an academic and data culture such an approach could fail other professional learning settings should be explored in tandem with the evolution of policymaking and institutional instruments supporting professional practices in our studys practices we noticed separate worlds between practice and the open science agenda we purported that the social and cultural implications of being a scholar in the digital age require further understanding of researchers professional practices regarding social media and their digital skills we dealt with social activity related to data which is entangled with many motivations and knowhow as drivers of informal learning we purport that the depicted situation points to the need to actively explore the microlevels of stakeholders engagement and a more holistic approach to professional learning to move the agenda of open science and open data forward the peerreview history for this article is available at oir0520210255 keywords open research data academic social networks open data use open data quality researchers data literacy paper type research paper the social activity of open research data 197 supplementary material the supplementary material is available online for this article about the authors juliana elisa raffaghelli is a researcher at the universitat oberta de catalunya faculty of psychology and educational sciences her research interests focus on professional development for the oir 471 use of technologies in teaching and diversified work contexts with a strong presence of international global collaboration open education and science critical literacy for the use of technologies with particular reference to big and open data issues she has covered roles in research coordination of international and european projects learning design and teaching in several universities and research institutions she did phd in education and cognitive sciences juliana elisa raffaghelli is the corresponding author and can be contacted at stefania manca is a research director at the institute of educational technology of the national research council of italy her research interests include social media and social network sites in formal and informal learning teacher education professional development and digital scholarship and student voicesupported participatory practices at school she is coeditor of the italian journal of educational technology and editorial board for the internet and higher education for instructions on how to order reprints of this article please visit our website or contact us for further details the social activity of open research data

purpose although current research has investigated how open research data ord are published researchers behaviour of ord sharing on academic social networks asns remains insufficiently explored the purpose of this study is to investigate the connections between ords publication and social activity to uncover data literacy gaps designmethodologyapproach this work investigates whether the ords publication leads to social activity around the ords and their linked published articles to uncover data literacy needs the social activity was characterised as reads and citations over the basis of a noninvasive approach supporting this preliminary study the eventual associations between the social activity and the researchers profile scientific domain gender region professional position reputation and the quality of the ord published were investigated to complete this picture a random sample of ord items extracted from researchgate 752 ords was analysed using quantitative techniques including descriptive statistics logistic regression and kmeans cluster analysis findings the results highlight three main phenomena 1 globally there is still an underdeveloped social activity around selfarchived ords in researchgate in terms of reads and citations regardless of the published ords quality 2 disentangling the moderating effects over social activity around ord spots traditional dynamics within the innovative practice of engaging with data practices 3 a somewhat similar situation of researchgate as asn to other data platforms and repositories in terms of social activity around ord was detected research limitationsimplications although the data were collected within a narrow period the random data collection ensures a representative picture of researchers practices practical implications as per the implications the study sheds light on data literacy requirements to promote social activity around ord in the context of open science as a desirable frontier of practice originalityvalue researchers data literacy across digital systems is still little understood although there are many policies and technological infrastructure providing support the researchers do not make an indepth use of them

introduction when individuals are searching for the treatment of healthrelated issues such as acidity indigestion diarrhoea aches and discomforts or even very particular problems such as shedding pounds menstrual issues allergic reactions nostrils drips hair loss etc they tend to first and foremost hunt for any potential remedies or substitutes in their near vicinity further if the medical conditions require certain sort of major or minor surgery the susceptibility and sentimental stir in the minds of the individuals may be even higher this is especially so when the attitude of the consulting doctor is nonchalant less supportive less empathetic or frank in communicating the diagnosis and treatment with the patient and his family the frustration with the doctors ability to fulfil the patients informative as well as emotional needs leads to the patients tendency to look out online and join healthcare communities and rather seek advice from the netizens available online the study aims to examine the variables affecting patients empowerment in online health communities further it aims to study whether the empowerment gained by joining ohcs can lead to better compliance by patients also whether patients with varying health locus of control feel more empowered by participating in online health communities the paper further proposes that ehealth literacy moderates the relationship between patient empowerment and compliance chin 7 observed how ohcs have modified the relationship of a doctor and a patient from paternalism to enhanced autonomy hence this research study also aims to examine the moderating role of physicians paternalism in moderating the association between patient empowerment and compliance social media usage by patients for healthrelated issues as stated by hughes etal 23 health 20 can be described as the use of certain online tools by various stakeholders in the healthcare system viz doctors patients caregivers and even research scientists they utilise the opensource information and content shared by users coupled with the power of networks and are able to not only personalize health care and also collaborate and promote health education the 20 monitor in health 20 refers to the drastic movement and transition from the traditional static web pages to the contemporary usergenerated pages and content which is dynamic and easy to share some of these comprise blogs videosharing sites social networks wikipedia mashups hosting services and webbased software applications with easy access to digital technology patients are able to share healthrelated information promptly and are in fact way ahead of healthcare professionals social media tools owing to its participative and collaborative nature are proficient at creating and retrieving information and further sharing it with patients or other health care consumers kaplan and haenlein 24 categorise social media into various kinds viz blogs microblogs multimedia groups websites for socialising collaborative projects and simulated universes hernandeztejada etal 16 conducted research on the usage of social media in healthcare and observed the following key insights • around 42 consumers use social media to check for patient reviews of doctors clinics hospitals and lines of treatment • methodology a critical and comprehensive analysis was conducted on the expansive literature available on online health communities a narrative literature review was used to achieve this broad objective the propositions were formed based on an analysis of the body of literature and secondary sources the following requirements had to be met by the studies in order for them to be considered for the overview inclusion and exclusion criteria publications that were selected were peerreviewed articles englishlanguage publications studies with an interpretive or exploratory design studies addressing the relationship between social support and empowerment consideration of empowerment as an independent variable and evaluation of patient compliance as an outcome variable the search period for this study was for publication between 1102021 and 132022 publications that were excluded were the ones not available in english or the ones mostly about overthecounter medicines search strategy an findings and discussion wiley pubmed scopus springer taylor francis were the main academic databases used for this research in wiley we found 140 journal articles in english 150 in pubmed 110 in taylor francis 100 in springer 100 in scopus papers that were found relevant to the topic were selected by using a predefined inclusion and exclusion criteria this was followed by an additional round of screening in which 450 studies were rejected and removed from the combined pool of 600 research studies in the next step of screening the titles and abstracts of the examined papers were assessed by both the authors with appropriate knowledge of the conceptual boundaries social support albrecht and adelman 2 define social support as verbal and nonverbal communication between recipients and providers that reduces the uncertainty about the situation the self the other or the relationship and functions to enhance the perception of personal control in ones experience patients that take an interest in their healthcare and are healthconscious frequently employ social media channels to learn from and educate one another about different therapies and ailments ohcs are a platform where users with common interests make new friends upload photos and remain in contact with old pals boyd and ellison 6 ohcs are going to play an important part as pandemic has impacted the physical and mental wellbeing of people from all walks of life be it academia kumar et al 28 healthcare workers pujari kumar 46 1011 valenzuela et al 57 emphasised that utilising facebook greatly promotes social capital and individual psychological wellness and thus has an advantageous connection with perceived support from others and creating less anxiety and elevated fulfilment in life particularly in excessively anxious categories nabi et al 37 numerous definitions of social support identify three major forms of social support societal integration perceived support from others and performed social assistance vangelisti 58 the perspective on social embeddedness focuses on an individuals connections to others or the available social ties in their social environments stokes 55 perceived social support is pertinent to mental or intellectual assessments of positive interactions and can be described as the social support that people believe is available to them procidano heller 45 the third component implemented social help is defined as the activities that people take while assisting others barrera 4 shafi et al 52 on the contrary the power originating from open interaction is aimed at realising a settlement thus in a functional perp scenario patients exercise selfefficacy better control and proficiencies while having a conversation with the doctor according to barak et al 6 ohcs provide informational emotional and relational supports which further help the patients to have better control over themselves higher confidence and personal autonomy and acquaint them with sociable skills to manage their own problems and wellbeing arnold 3 conducted a study on pregnant women and observed that these ohcs help them to exchange knowledge and build empathetic relationships leading to higher empowerment several other studies have found that ohc users diverse actions result in patient empowerment which manifests itself in a variety of good outcomes for ohc users increased selfesteem selfefficacy and control and management of ones health problems improved social wellbeing and quality of life more confidence in interactions with doctors more competent use of health services and even improved social wellbeing and quality of life according to oh and lee 40 online community involvement has a good impact on computermediated social support which allows patients to take control of their selfcare the relationship between computermediated social support and the intention to actively engage with the doctor was shown to be mediated by the patients sense of empowerment user cmss according to pontevia and menvielle 44 has a good impact on user empowerment and engagement during consultations which affects user commitment to the physicians relationship the social interaction of people can be explained by two main theories the social exchange theory and the economic exchange theory set places more emphasis on the socialemotional parts of participant relationships whereas eet places more emphasis on the material more monetary aspects of the exchange connection shore et al 54 individuals must believe their contribution is valuable enough to share with others in order to provide new value they also anticipate taking advantage of some of that value pontevia et al 43 horng 17 patient compliance compliance by patients refers to the extent patients are following the medication referred by the doctor laugesen et al 29 it includes adherence to medicines as well as adopting healthy lifestyles lu et al 31 additionally patient compliance helps to build a healthy relationship between a doctor and a patient especially in the case of chronic diseases where patients regaining depends on selfadministration and selftracking horwitz horwitz 18 tustin 57 has emphasized that compliance by patients can have better effectiveness in their treatment especially when the diagnosis and treatment prescribed is good horwitz horwitz 18 further added that patients with high compliance are healthier than those with low levels of compliance ohcs increase patient empowerment with more information now by their side petric et al 42 lu and zhang 33 have also observed that conversations that take place between the doctor and the patient help in better patient compliance empowered patients bring in better health outcomes lorig et al 30 effective use of health services improved health status bergsma carney 5 and medication adherence hernandez et al 16 pontevia et al 43 the patients participation on the online platform and use of social media continues to provide several obstacles the most significant of them is privacy as some people are unwilling to discuss their health difficulties amenably wensing 62 other obstacles or zones of worry for patients and physicians while utilising social media include a lack of refuge for personal information identity management inaccurate information and a large number of peoples incapacity to utilise a computer and the internet properly househ et al 19 however it may be claimed that these issues will alter for patients with differing levels of ehealth literacy medical paternalism and health locus of control ehealth literacy norman and skinner 39 define electronic health or ehealth literacy as the ability to seek locate interpret and utilise health information using electronic resources and use this knowledge to solve healthrelated problems it attempts to assist people in making educated healthcare decisions by utilising ehealth resources norman and skinner 39 and is seen as a critical tool for enhancing wellness and eliminating fitness disparities wu et al 64 ohc which is a particular sort of digital society makes it possible for social networking participation apo mediation collaboration and openness within and between different healthrelated stakeholders eysenbach 13 hara hew 21 healthcare consumers and patients can exchange health knowledge and social support huang et al 22 and make online appointments with health professionals guo et al 15 empowerment was found to have a substantial relationship with improved health among medically literate people nafradi et al 38 petric et al 42 according to freeman et al 14 ehealth literacy is crucial in the daily lives of teenagers and can encourage healthy behaviours such as vigorous physical activity and a balanced diet lu and zhang 32 also verified that patients ehealth literacy in ohcs can assist increase their adherence by directing their communication behaviour with physicians generating a health information seeking behaviour and enhancing their assessment of the quality of information in ohcs as a result it is claimed that proposition 4 people with high ehealth literacy will feel more empowered after participating in ohc and will comply more as compared to people with low ehealth literacy physicians paternalism paternalism is a pattern of behaviours by a person or organization which limits liberty or autonomy of an individual for that persons or groups own good regardless of the will of the individual paternalism ie the medical expertise a doctor has about a disease and autonomy ie the personal expertise that a patient has about their own body are the two ends of a continuum the patient loses all autonomy when a doctor practises full paternalism patients believe they are unable to make educated judgements about themselves and as a result they abdicate all responsibility for their health situation the paternalistic concept of the physicianpatient interaction promotes the sick role of patients especially when individuals and physicians have dramatically different degrees of expertise experience and authority in healthrelated concerns emanuel and emanuel 12 patients who are in a dangerous or unknown medical scenario rely on a trustworthy physician and hisher specialised expertise to guide them care ohcs for health issues and health online communication health and medical content on the internet patient portals from providers and employers data capturing and personal health record systems all give an alternative to the physiciandirected paternalistic approach ohcs empower patients through informed decisionmaking with varied levels of psychological engagement in order to present facts exchange perspectives and extract their opinions petri and petrovcic 41 discovered that the physicians perceived paternalism had a moderating effect on the functional components of empowerment while having a considerable influence on the dysfunctional components and control lu and zhang 33 health locus of control hloc is a concept that internal and external variables impact an individuals health devin et al 9 when a person believes in external control he believes that external forces or the power of others dictate life events but when he believes in internal control he believes that life events are under his control and that he is accountable for them macsinga nemeti 34 internal locus of control and external locus of control are two types of multidimensional health locus of control eloc can further be subdivided into subdimensions such as powerful others doctor chance and god hloc wallston et al 61 wulandhari et al 65 discovered that chance hloc and adherence have a negative relationship ahmedani et al 1 discovered a link between gods hloc and medication adherence the hloc and adherence to powerful others were found to have a negative association people having a high doctor hloc according to theofilou 56 are more likely to stick to their prescribed medical regimen individuals who think they have extraordinary control over their health benefit psychologically and behaviourally individual loneliness and impotence as well as an undesirable struggle against illnesses would come from disbelief in this issue the term internal locus of control refers to personality traits and characteristics that can assist people in gaining more control over their life individuals with an external locus of control have more mental issues than those with an internal locus of control empowerment is an energising aspect that encourages individuals to take control of their health habits and disease treatment is one of the patientrelated aspects empowerment may be interpreted as an individual choice referring to the patients authority and power in the medical setting or as a relational concept underlining the existing equality in the physicianpatient relationship nafradi et al 38 observed that patients perceptions of their capacity to control their own health ie iloca component of patient empowermentwere connected to higher drug adherence as a result it is argued thatproposition 6 people with internal hloc feel more empowered and comply more as compared to people with external hloc in conclusion we propose a model for patient empowerment and patient compliance for the several variables and facilitators related to the engagement of individuals in online health communities figure 1 model of patient empowerment and patient complaince social support • esteem • informational • network • emotional patient empowerment • selfefficacy • patient control • competency moderators • ehealth literacy • physician paternalism • health locus of control patient complaince managerial implications the outcomes of the present study will benefit medical professionals to develop strategies for providing more emotional and psychological support as compared to informational and esteem support so as to increase participation in ohcs medical professionals should incorporate strategies to increase patient ehealth literacy as it tantamount to patients feeling more empowered after participating in ohcs social implications the present paper will benefit medical practitioners as medication adherence can be increased when patients feel empowered ie they feel that they have the autonomy and competence to improve their well being efforts should be done to improve patients health as well as digital literacy so that patients can cocreate value for themselves too online health communities serve as a powerful tool to change patients hloc from external to internal health professionals should also strive to reduce their paternalism in ohcs and make efforts to make people realize that their health is an outcome of their internal locus of control theoretical implications and directions for future research according to the present studies social support encompasses all types of verbal and nonverbal communication that minimises confusion about the situation the psychological or cognitive supports which are available to patients from their social environments instils confidence and skills in them needed to have a meaningful discussion with physicians thus enabling empowered patients patient empowerment which comprises of sense of autonomy competence and selfefficacy make people believe in following compliance ie medication adherence which is also in line with the results of nafradi et al 38

a significant number 49 of indian users tend to rely on digital media to either access healthrelated information or use the internet as a precursor to visit a doctor 20 according to a report by raheja 48 the internet of things iot connection has the potential to change the malfunctioning medical system into a comprehensive effective and individualised system this will allow for a more proactive approach to wellness and overall health reducing medical expenses through these inclusive practices online health communities in india demonstrate significant clout to transform the healthcare industry by empowering patients they offer a platform to all key stakeholders that are the healthcare professionals patients and even the caregivers alike to come forth share their experiences and develop remedies for various issues faced by the healthcare industry this paper examines the antecedents involved in the empowerment of patients in online health communities ohcs and the outcomes of this in the form of participant compliance the research additionally examines the moderating impact of certain factors such as the patients ehealth literacy and health locus of control hloc and the physicians paternalism in examining the relationship between patient empowerment and compliance the findings of the research propose a construct or a theoretical model for the numerous factors and moderators associated with the patients participation in online health communities the social support available to patients leads to more empowered patients ultimately resulting in higher patient compliance further this patient empowerment which comprises of sense of autonomy competence and selfefficacy makes people more compliant the theoretical construct between patient empowerment and patient compliance is further moderated by the patients ehealth literacy and health locus of control hloc and the physicians paternalism

introduction the prevalence of oneperson households has increased over the past 2030 years in many wealthy countries viewed as part of the second demographic transition this trend reflects both changes in marriage behavior and changes in attitudes and preferences the former emphasizes the roles of later entry into marriage increasing proportions of the population who never marry and high rates of marital dissolution in increasing exposure to the risk of living in a oneperson household 2 the latter emphasizes educational expansion growing economic independence for women increasing desire for privacy independence and selfactualization and growth in infrastructure and services that facilitate living alone popular media accounts have highlighted both the pros and cons of living alone touting independence and privacy while raising concerns about isolation and loneliness however careful empirical analyses of relationships between living alone and wellbeing are limited the general trend is toward more solo living but the prevalence of oneperson households varies markedly across countries as shown in figure 1 in 2010 the prevalence of oneperson households ranged from over onethird in several northern european countries to about half that level in southern europe explanations for this crossnational variation in solo living tend to emphasize differences in both the public safety net individuation and postmaterialist values and social and cultural norms regarding independence for example the relatively high prevalence of oneperson households in scandinavian countries likely reflects policies supportive of residential independence as well as relatively strong preferences for residential independence although the role of delayed union formation is recognized i am unaware of any efforts to quantify the impact of delayed marriage and union formation on trends in solo living figure 1 prevalence of oneperson households in oecd countries 2010 source oecd social indicators data base in light of this theoretical background it is surprising that the prevalence of oneperson households is also relatively high in japan a country characterized not only by limited public housing support but also by a strong tradition of extended family living and an ethos of independence that is weaker than in the us and other western countries figure 1 indicates that 29 of all households in japan contain only one person a level that is above the oecd average and higher than in countries like australia canada and the us where living alone arguably has a longer history as a normative arrangement research on the rise in oneperson households at older ages is common in japan but similar efforts to understand trends causes and consequences of living alone at younger ages are scarce related research on trends in home leaving has shown that the large majority of those who leave home prior to marriage form oneperson households my goal is to begin filling this gap in the research literature by focusing on recent trends in the prevalence of oneperson households among young adults in japan and by examining if and how living alone is associated with happiness and health i begin by using published census data to examine the extent to which the increase in oneperson households among men and women aged 2039 is explained by changes in marriage patterns especially the pronounced delay in marriage over the past 30 years these analyses are valuable for the insights they provide regarding the role of delayed marriage in the absence of many of the attitudinal policy and housing shifts thought to underlie the increase in oneperson households in other countries they also contribute to the large body of research on marital change in japan in two important ways first they extend our understanding of the implications of changing marriage behavior by focusing on living arrangements a large body of research has examined the implications of later and less marriage for trends in fertility but attention to the implications for living arrangements is more limited second the focus on solo living extends the research that has focused on relationships between delayed marriage and living arrangements to date most of this work has emphasized the growing number of unmarried young adults who live with their parents often characterized pejoratively as aristocrat singles or parasite singles i then use individuallevel data from multiple rounds of the japanese general social survey to examine whether and how levels of happiness and subjective health among young men and women living alone differ from those of their counterparts who are either married or unmarried and living with others japan is a potentially rich source of insight into links between solo living and wellbeing for several reasons the normativity of extended coresidence in the parental home prior to marriage suggests that in contrast to other developed societies the role of womens growing economic independence and increasing valuation of privacy may be of limited importance in promoting solo living the relatively high economic and social costs of establishing an independent household in japan further suggest that explanations emphasizing the increasing attractiveness of single living may be of less relevance than in the us or european countries a second motivation for focusing on japan is evidence that the country fares relatively poorly in comparative studies of happiness or emotional wellbeing for example the world happiness report ranked japan below most other economically similar countries in terms of overall happiness and oecd data show that it has the highest proportion who report little or no interaction with people other than family members substantial projected increases in the prevalence of oneperson households thus highlight the value of understanding the extent to which living alone is associated with levels of happiness health and perhaps other dimensions of individual wellbeing background oneperson households in japan figure 2 describes the trend in the prevalence of oneperson households in the japanese population from 1960 with projections through 2030 the increase over time is clear with oneperson households currently comprising onethird of all households at the population level oneperson households are now the most common of the six major household types in japan figure 3 presents the proportion of men and women living in oneperson households in 2010 by fiveyear age group age patterns are very different for men and women with earlyadulthood residence in oneperson households more common among men and solo living at older ages more common among women census data also show marked regional differences in both the prevalence and age distribution of oneperson households in tokyo and other large metropolitan areas the prevalence is much higher with oneperson households comprising nearly half of all households oneperson households are also more heavily concentrated at younger ages in large urban areas rapid population aging is partially responsible for the patterns observed in figures 2 and3 given the relatively high prevalence of oneperson households at older ages i therefore limit the analytical focus of this paper to ages 2039 at which the impact of trends in marriage timing is more relevant figures 4 and5 present trends in the percentage of individuals in this age range living in oneperson households for men and women respectively during the period 19852010 change among men was concentrated in the 30s with oneperson households increasing from 13 to 19 among 30to 34yearolds and from 9 to 16 among 35to 39yearolds for women the patterns are even more striking with 23 fold increases in the proportions living alone beyond age 25 the number of 2039yearolds living in oneperson households increased by 19 for men and by 89 for women over the twentyfive year period the fact that these trends in oneperson households correspond closely to trends in age at first marriage highlights the potential role of delayed marriage in explaining the increase in living alone this is particularly important in a country like japan where the alternatives to marriage for young men and women are qualitatively different than in most western societies of particular importance are the relatively low prevalence of nonmarital cohabitation and the relatively high prevalence of coresidence with parents cohabitation experience has increased markedly in recent years but the average duration of cohabiting unions in japan is relatively short and the proportion of unmarried men and women in cohabiting unions at any given point in time is relatively low for example among unmarried women age 2529 in the 2010 national fertility survey only 2 were currently in a cohabiting union delayed marriage in the absence of longterm cohabiting unions is thus a potentially important reason for the observed increase in the prevalence of oneperson households at the same time however the longstanding tendency for unmarried japanese to remain in the parental home until marriage presumably limits the impact of delayed marriage on growth in oneperson households significant growth in the number of unmarried men and women living with parents has been the subject of much media attention with critics arguing that this immature or selfish behavior contributes to lower fertility and to lower economic growth it is clear however that agespecific proportions of unmarried men and women coresiding with parents have actually remained relatively stable over time and that the trend toward later marriage is the primary reason for growth in the number of unmarried adults living with parents presumably later and less marriage also contributes to growth in the number of young adults living in oneperson households but this relationship has received far less attention this is an important omission if we believe that living arrangements play a key role in shaping experiences exposures and wellbeing during early adulthood living alone and wellbeing what are the implications of the large increase in living alone for the wellbeing of young japanese adults in the context of later and less marriage in contrast to research on the implications of living alone at older ages in japan attention to the relative wellbeing of young adults living alone is scarce research on the us and other countries provides only limited guidance studies demonstrating that married men and women are happier and less depressed than their unmarried counterparts are plentiful and others have compared the emotional wellbeing of married and cohabiting men and women but recent efforts to evaluate relationships between household structure and wellbeing among the unmarried are less common to some degree this presumably reflects the fact that living alone is now a common and normative part of the early life course in the us oneperson households are the fastest growing type of household and are now one of the two most common types of household along with married parents living with children efforts to understand the implications of living alone for wellbeing in the us were more common in the past when marriage was relatively early and cohabitation was less prevalent than it is today the results of previous research are mixed with some finding that living alone is associated with worse overall health higher levels of problematic alcohol use and lower psychological wellbeing others have found either that differences in wellbeing between the unmarried who live alone and those who live with others are small or that those living alone actually fare better than those who are married klinenbergs recent book going solo paints a very positive picture of living alone but is based on select cases that tend to feature welleducated highlyconnected individuals i draw upon this earlier research from the us and europe to consider several possible mechanisms that might contribute to differences in the wellbeing of young adults living alone relative to their married counterparts and their unmarried counterparts coresiding with parents these mechanisms include economic resources social isolation monitoring independence and selection i consider each in turn summarizing hypothesized relationships and discussing how these relationships may be shaped by distinctive features of the japanese context i also focus attention specifically on the implications for happiness and subjective health the two dimensions of wellbeing considered in the analyses presented below economic resources all else equal living alone obviously costs more than living with others additional income cost sharing and economies of scale all contribute to lower costs in shared households living alone may thus be associated with relatively lower levels of happiness and health if economic wellbeing is positively correlated with these outcomes this may be particularly relevant in the japanese context where unmarried men and women who do not live on their own typically coreside with parents an arrangement in which adult childrens economic contributions to the household budget are often quite limited the economic wellbeing and by extension the happiness and health of those living alone may also suffer from the high cost of establishing an independent household in japan where rents are high apartments are unfurnished and realtors often require large nonrefundable deposits high consumption aspirations may accentuate these relationships to the extent that the ability to achieve aspirations is related to happiness and subjective health alternatively it is possible that those in oneperson households have higher incomes or access to parental resources that facilitate living alone in comfort the potential implications of this kind of selection into oneperson households are discussed further below evaluating these alternative scenarios requires either objective or subjective measures of individual and household economic wellbeing social isolationloneliness perhaps the most widely emphasized explanation for evidence of poorer health among those living alone is lower social integration and social support the argument is that those who live alone are less connected with others and that this social isolation results in more limited social support which in turn contributes to lower levels of wellbeing empirical evidence to support this explanation is limited however furthermore some suggest that the relationship may actually be reversed with higher levels of social engagement and participation among those living alone this may be particularly true for more socioeconomically advantaged men and women living on their own expectations are similarly ambiguous in the japanese context on one hand strong cultural valuation of parentchild bonds and a history of social stigmatization of womens independent living prior to marriage suggest that living alone may be associated with lower levels of wellbeing via isolation and loneliness on the other hand evidence that the bulk of young adults socializing occurs within the context of work suggests that living arrangements per se may have little to do with isolation or loneliness evaluating this mechanism requires measures of social integration and social support such as network size perceived access to various types of support frequency of contact with friends or involvement in social organizations monitoring closely related to the idea of social support is an emphasis on monitoring and shared lifestyle one explanation for the apparent health benefits of marriage emphasizes the role of spouses in monitoring their partners health behaviors and encouraging a healthier lifestyle this kind of support or monitoring appears to be particularly important for understanding the health benefits of marriage for men among the unmarried in japan coresidence with parents presumably contributes to better health in similar ways to the extent that young men and women living alone have more limited access to regular healthy meals less monitoring and discouragement of risky behavior and less encouragement of regular hours we would expect this group to have lower levels of happiness and health in comparison not only with married men and women but also with their unmarried counterparts living with parents evaluating this mechanism requires information on health behaviors and lifestyle although it may be difficult to distinguish the extent to which these characteristics are due to monitoring rather than differential selection into alternative living arrangements privacyindependencefreedom assuming that a primary reason for living alone is a desire for independence and privacy and that enjoyment of this autonomy is positively associated with happiness and subjective health those living alone should fare better than their unmarried counterparts living with parents comparisons with the married are less clear given that concepts such as privacy and freedom mean very different things for those who are married and those who are not as described below it is possible that the distinctive patterns of gender relationships in japanese families may make the benefits of privacy independence and freedom particularly salient for women living on their own selection previous research on the us demonstrates that to some degree less favorable outcomes among those living alone reflects selection specifically the tendency for those with lower levels of socioeconomic resources to live alone similar patterns of selection characterize solo living in the uk furthermore evidence that the positive association between marriage and multiple dimensions of health and wellbeing partially reflects selection into marriage suggests that selection processes should result in lower levels of happiness and health among those living alone relative to those who are married the implications of selection processes for comparisons of the unmarried living alone and living with others are less clear but may be particularly important in the japanese context given that extended coresidence with parents remains widespread on one hand if those who choose to live alone are either the most eager to embrace an independent lifestyle or those with access to greater economic resources levels of happiness and health may be higher for this group relative to their unmarried counterparts coresiding with parents on the other hand if young adults without access to family or with strained family relationships have a relatively high propensity to live alone happiness and health may be relatively lower for this group both patterns of selection are likely to be operating perhaps in offsetting ways making the role of selection very difficult to evaluate access to longitudinal data that follow young adults as they move out of the parental home into independent living arrangements or marriage would allow for control of baseline levels of subjective health and other observable characteristics but the inability to control for potentially important unobservable factors would remain there is very little that can be done to understand patterns of selection in studies like this one that rely on crosssectional data gender differences while men are more likely to live alone in many european countries studies in the us and canada indicate that young women are not only more likely to live alone but also appear to fare better than men in independent living arrangements explanations for this pattern have focused on womens broader and more active social networks japans distinctive gender environment provides an interesting context in which to reevaluate these relationships there are compelling reasons to expect that living alone is associated with better mental health outcomes for women in japan just as in the us for example abundant anecdotal and empirical evidence highlights large gender differences in social networks and social engagement beyond the workplace similarly the highly asymmetric gender division of labor within japanese families highlights the potential benefits of living with others for men within marriage mens involvement in domestic work is particularly limited this is also true among unmarried men living with parents but the gender difference is less pronounced given that unmarried women coresiding with parents also do relatively little domestic work at the same time however differences in norms and expectations suggest that women living alone may not fare as well until recently solo living for unmarried women was socially stigmatized and normative support of continuous coresidence with parents prior to marriage was strong in combination with limited social alternatives to marriage this normative environment suggests that solo living is far more of an incomplete institution for women than for men in japan with potential consequences for gender differences in wellbeing among those who do live alone socioeconomic differences although much of the popular literature on extended coresidence with parents prior to marriage paints a picture of luxury with young singles benefitting from free room and board performing little in the way of domestic work and spending their earnings on travel hobbies and luxury goods analyses of who actually coresides with parents suggests a rather different story for example raymo and ono find that women who delay marriage while living with parents are on average less advantaged and live with lessadvantaged parents relative to those who marry earlier i am not aware of any careful studies of the characteristics associated with solo living but anecdotal evidence highlighting the condominium purchases of highlyeducated wellpaid singles suggests a possible interaction between socioeconomic status and living alone with more advantaged singles benefiting more from this arrangement than their less advantaged counterparts data and method the analysis proceeds in two parts in the first i use published tables from the 1985 and 2010 censuses to evaluate the extent to which the increasing prevalence of oneperson households is explained by changes in marital behavior and changes in living arrangements in the second part i use data from the 20002010 rounds of the japan general social survey to ascertain the extent to which indicators of happiness and subjective health among unmarried young men and women living alone differ from those of their counterparts living with parents the rise in oneperson households the role of changes in marriage behavior and changes in living arrangements by marital status to ascertain the extent to which the growth in oneperson households described in figures 4 and5 the proportion of the 2039 yearold population living in a oneperson household is the weighted sum of ageand marital statusspecific proportions living in oneperson households with the weights being the agespecific proportions in each of the four marital status categories note that there are eight combinations of marital status and living arrangements individuals with missing marital status were distributed across marital status categories according to the sex and agespecific distribution of those with observed marital status comparing the observed increase in the prevalence of oneperson households with the calculated change in the two counterfactual scenarios just described allows for simple decomposition of the observed increase into the contributions of changes in marriage behavior and in the propensity to live alone conditional on marital status living arrangements happiness and health the japanese general social surveys are nationallyrepresentative surveys conducted annually from 20002003 and in 2005 2006 2008 and 2010 the pooled data file includes 22796 respondents between the ages of 2089 as in the counterfactual analyses just described i limit the analytical sample to men and women age 2039 the key independent variable in this set of analyses is a trichotomous indicator of respondents living arrangements and marital status unmarried and living alone unmarried and living with others or married this more parsimonious classification of marital status and living arrangements is motivated by small cell size and facilitates interpretation of results i consider two measures of wellbeing that are consistently available across survey years happiness and selfrated health in contrast to happiness which is a measure of emotional wellbeing selfrated health refers to health generally and thus reflects both emotional health and physical health both of these indicators are measured on fivepoint scales with higher values corresponding to greater wellbeing happiness ranges from unhappy to happy and selfrated health ranges from poor to excellent i estimate ordered logistic regression models for happiness and selfrated health as a function of the threecategory living arrangements variable treating unmarried respondents who are living with others as the omitted category allows for straightforward evaluation of differences in wellbeing among the unmarried comparison of both groups of unmarried respondents with their married counterparts is also straightforward using postestimation wald tests all models control for age sex educational attainment and survey year i use a threecategory measure of educational attainment high school or less vocational school or junior college fouryear university or more results of ols models are substantively identical to the results of the ordered logistic regression models presented below to evaluate the role of economic resources in shaping relationships between household structure and happinesshealth i include two subjective measures of economic wellbeing the first is a measure of subjective social class that asked respondents to identify their location in japanese society on a 10point scale ranging from the very bottom to the very top the second is a fivepoint measure of relative income assessment ranging from substantially lower than average to substantially higher than average the survey also contains measures of individual income and household income but i have chosen to use the subjective measures in order to minimize the number of cases lost to missing income data circumvent issues related to endogeneity of living arrangements and own income and avoid the need for assumptions about income sharing within households i also include a measure of employment status and type as a rough proxy of economic wellbeing if limited economic resources contribute to lower levels of emotional wellbeing among those living alone as suggested earlier the negative coefficient for oneperson households should be attenuated when these measures of economic wellbeing are included in the models to evaluate the role of social isolation i include measures of the frequency with which respondents get together with their friends and their participation in social organizations respondents were asked how often they get together with friends with categorical response options ranging from never to almost every day based on the results of preliminary analyses i collapsed this variable into a dichotomous indicator distinguishing those who reported getting together with friends at least once a month from those who reported less frequent gatherings this question was only asked of half of the respondents to the 2003 and 2006 surveys so the size of the analytic sample is reduced accordingly the measure of participation in social organizations is constructed based on responses to questions about participation in seven different kinds of organizations political groups religious groups sports groups volunteering groups citizens groups hobbyrelated groups and industry organizations based on the results of preliminary analyses i have dichotomized responses to these questions distinguishing those involved in at least one type of organization from those not involved in any of the seven types of groups finally by estimating interactions between the living arrangements variable and both sex and educational attainment i evaluate the posited differences in the relationship between living alone and both happiness and health unfortunately the japanese gss does not contain information that would allow for evaluation of the posited role of spousal monitoring or enjoyment of privacy and independence in shaping relationships between living alone and happiness or health results should be evaluated with this caveat in mind results the rise in oneperson households the role of changes in marriage behavior and living arrangements as shown in figure 6 the proportion of 2039 yearold men living in oneperson households increased from 16 in 1985 to 22 in 2010 for women the proportion more than doubled from 06 to 14 the hatched and striped bars are the counterfactual proportions calculated by holding agespecific marital status distributions and ageand marital statusspecific proportions living in oneperson households constant at their 1985 values these figures represent the counterfactual prevalence of oneperson households that would have been observed in 2010 if marriage behavior had not changed or if living arrangements had not changed since 1985 for men and women the hatched bars are both lower than the observed 2010 value indicating that changes in marital status contributed to the observed rise in oneperson households the fact that the striped bars are taller than the hatched bars indicates that for both men and women changes in living arrangements were less important than changes in marriage in contributing to the rise in oneperson households indeed changes in living arrangements appear to explain none of the increase in oneperson household among men the proportion of the total observed increase in oneperson households for men that is due to changes in marriage behavior i is 10 and the proportion due to changes in household structure is 05 for women the corresponding proportions are 78 and 30 the remaining 58 of the observed difference not due to changes in marital status or household structure can be attributed to the third interaction component of this simple decomposition procedure because these overall measures may obscure informative differences across the 20year age range i replicate this standardization procedure at each single year of age the results are presented in figures 7 and 8 in these figures the solid black line is the observed agespecific proportion living in oneperson households in 1985 the broken black line is the proportion observed in 2010 and the gray lines marked with circles and triangles are the counterfactual proportions calculated by holding marital status and living arrangements constant at their 1985 levels respectively comparison of the gray circle line with the observed line for 2010 thus indicates the amount of the agespecific increase in oneperson households that can be attributed to changes in marital status similarly comparison of the gray triangle line and the observed 2010 line shows us how much of the observed change can be attributed to changes in living arrangements for men the decline in solo living at ages 2024 is explained primarily by changes in living arrangements beyond age 25 however the rise in oneperson households is due almost entirely to changes in marriage behavior more specifically the small decline in the prevalence of oneperson households among 2024 yearold men reflects a decline in the propensity for never married men to live alone that is offset to some extent by a small increase in the proportion never married at these ages beyond age 25 however the trend toward later and fewer marriages accounts for nearly all of the growth in oneperson households for men in contrast to the findings on young men the propensity for never married 2024 yearold women to live alone increased over time accounting for much of the increase in oneperson households for this age group beyond age 25 however the relative importance of changes in womens marriage and changes in their living arrangements conditional on marriage reverses with the trend toward later and fewer marriages accounting for an increasing proportion of the rise in oneperson households beyond age 30 the growing prevalence of never married women accounts for all of the increase in oneperson households living arrangements and emotional wellbeing table 1 presents descriptive statistics for the variables used in analyses of the jgss data by living arrangements bold numbers indicate mean values of continuous variables that are significantly different from those for the unmarried living alone and asterisks indicate categorical variables that are significantly associated with living arrangements the first four rows show that both happiness and selfrated health are highest among the married and lowest among the unmarried living alone however the magnitude of these differences is rather small with the two groups of unmarried respondents differing by no more than oneseventh of a standard deviation in the outcome of interest differences in selfrated health across the three groups are not statistically different from zero other variables show that that those living alone are more likely to be men have higher levels of education be slightly older and resemble their unmarried counterparts living with others in terms of subjective social status and financial wellbeing the proportion seeing friends regularly is similar among both groups of unmarried respondents but a somewhat higher proportion of those living alone reports belonging to at least one social organization in general the differences between unmarried japanese men and women living alone and those living with others are smaller in these data than suggested by the literature summarized earlier tables 2 and3 present results for the models of happiness and selfrated health respectively looking first at table 2 model 1 shows that the unmarried living alone are significantly less happy and the married are significantly and substantially more happy than their unmarried counterparts living with others the odds of being happy vs somewhat happy are 21 lower for the unmarried living alone relative to the unmarried living with others happiness declines with age and is higher among women and among the more highly educated model 2 shows that both measures of subjective economic wellbeing are positively associated with happiness and that those in regular employment are significantly happier than those not employed and those in nonstandard employment however inclusion of these variables does little to alter the relationships between living arrangements and happiness estimated in model 1 similarly in model 3 both measures of social integration are positively associated with happiness but their inclusion does not alter the general conclusion that living alone is associated with lower levels of happiness this is not surprising given the relatively small differences in social integration across living arrangements described in table 1 including interactions between sex and living arrangements in model 4 shows that living alone is not significantly related to unmarried mens happiness and that the coefficient for living alone does not significantly differ by sex it is important to note however that among unmarried women those living alone report significantly lower levels of happiness than their unmarried counterparts living with others although not directly related to the questions motivating this paper it is interesting that marriage is associated with significantly lower levels of happiness among women none of the interactions between educational attainment and living arrangements in model 5 are significantly different from zero levels of happiness are significantly lower for those living alone relative to their unmarried counterparts living with others among junior collegevocational school graduates but not among those with a high school degree or less or among university graduates table 3 shows that married respondents report better selfrated health but living alone is not associated with worse subjective health among the unmarried the coefficient for living alone is negative but not significantly different from zero other coefficients are similar to those in the models for happiness selfrated health declines with age and is higher among women and university graduates subjective economic wellbeing and social integration are both associated with better selfrated health but the inclusion of these measures does not alter the estimated coefficients for living arrangements models 4 and 5 provide no evidence of gender or educational differences in the relationship between living alone and selfrated health in no case does the selfrated health of those living alone differ from their unmarried counterparts living with others although not directly related to the questions motivating this study models 4 and 5 do indicate some significant differences in the relationship between marriage and health among the married respondents women and junior collegevocational school graduates report higher levels of selfrated health than men and those with lower levels of education discussion the increasing prevalence of young adult oneperson households in japan is a major focus of the real estate and service industries but has received relatively little scholarly attention despite the proliferation of oneperson housing omnipresent convenience stores filled with individuallypackaged items and numerous web sites providing tips on hitorigurashi we know very little about the mechanisms underlying this trend the characteristics associated with living alone or the potential implications of solo living for wellbeing my primary goal in this paper was to provide an empirical foundation from which to begin answering these questions using census data i have shown that the rise in oneperson households among men and women age 2039 is primarily the result of changes in marriage behavior importantly these relationships differ by both age and sex the trend toward later marriage explains all of the increase in oneperson households for men and about threefourths of the increase for women for women the remainder is explained by changes in living arrangements and these changes in living arrangements are more important for explaining the rise in oneperson households at younger ages whereas changes in marriage behavior are more important at older ages subsequent research should examine factors underlying the observed changes in living arrangements conditional on marital status for young women these might include changing parentchild relationships increasing desire for independence a growing social acceptance of living alone increased access to attractive housing options and growing financial independence it is important to note however that despite the increase in living alone young unmarried japanese remain far more likely than their counterparts in many other wealthy countries to coreside with their parents in the us and other countries where extended coresidence with parents is uncommon scholarly interest in the relative wellbeing of young adults living on their own is limited despite substantial media attention to klinenbergs recent book going solo most research on the relative wellbeing of those living in oneperson households was conducted years ago when this was a less common arrangement prominent theories suggested that the higher costs of living alone and the social isolation it entails should contribute to lower levels of emotional wellbeing extending these ideas to the japanese context i examined general social survey data from the period 20002010 to produce three main findings first living alone is associated with significantly lower levels of happiness but differences between those living alone and those coresiding with parents are not substantively large for example in model 1 the difference between the unmarried living alone and those living with others is half the difference between those with a high school degree or less and those with university education this general pattern of results is similar to a number of earlier studies that found lower levels of wellbeing among young men and women living alone in the us second subjective economic wellbeing and social engagement are positively associated with happiness and health but do not explain the observed differences between young unmarried men and women living alone and their counterparts living with others levels of economic wellbeing and social engagement as measured in the jgss are similar for those living alone and those living with parents if these findings are confirmed with other data sources we will need to look beyond economic wellbeing and social integration to understand why those living alone fare less well than their counterparts living with parents potentially relevant factors such as emotional and instrumental support and monitoring provided by coresident parents adherence to normative expectations about coresidence with parents or other correlates of selfselection into different living arrangements could not be considered due to data limitations attention to alternative mechanisms such as these is an important task for subsequent research on the link between solo living and wellbeing third there is little to suggest that relationships between living alone and happiness or health differ by sex or socioeconomic status the only significant differences from models 4 and 5 indicated that living alone is associated with relatively lower happiness among women and among junior collegevocational school graduates projected trends in marriage suggest that the prevalence of oneperson households is likely to continue to increase among young adults in japan according to recent projections nearly onefourth of those born after 1985 will never marry a trend that should result in further growth in living alone not only among those in young adulthood but also in middle and later life additional efforts to understand who lives alone why under what circumstances and for how long are thus of critical importance for understanding how demographic and social changes are reshaping lives in one society that has until recently been characterized by a highlystructured homogeneous work and family life course comparison of the japanese experience with that in other familistic countries where marriage behavior and attitudes have changed rapidly may provide important insights into the ways in which the causes and consequences of increases in oneperson households are shaped by social political and economic context acknowledgements i would like to thank two anonymous reviewers and participants at the conference on oneperson households in asia for their very helpful suggestions and comments on earlier versions of this paper this research was conducted at the center for demography and ecology at the university of wisconsinmadison acknowledgements

oneperson households are the most common type of household in japan but relatively little is known about the causes and potential consequences of the rise in solo living in young adulthoodi address two questions what accounts for the rise in oneperson households in young adulthood how is solo living in young adulthood related to wellbeing methods i use census data to evaluate how much of the growth in oneperson households at ages 2039 between 1985 and 2010 is explained by change in marital behavior and how much is explained by other factors i then use data from the 20002010 rounds of the japanese general social survey to examine whether and why men and women living alone differ from those living with others in terms of happiness and selfrated healthof the increase in oneperson households for men and threefourths of the increase for women results of the second set of analyses indicate that those living alone are significantly less happy than those living with others whereas the two groups do not differ with respect to selfrated health the observed differences in happiness are not explained by differences in subjective economic wellbeing or social integrationthe relatively small magnitude of estimated differences in happiness and health provides little evidence to suggest that the projected rise in oneperson households is likely to play a significant role in contributing to lower levels of wellbeing among young adults in japan

introduction the immigrant populations of western nations have grown substantially in recent times in 2013 508 million persons residing in european union member states were born in a foreign country just over 10 percent of the total eu population and nearly two thirds of these individuals were born beyond eu borders 1 approximately 40 million persons living in the united states in 2012 were born abroad constituting almost 13 percent of the national population 2 immigrant populations have also become increasingly diverse 3 in the context of this evolving landscape we require a better understanding of the impact of psychosocial difficulties and psychological distress 4 5 6 and racial discrimination and marginalisation 7 and how patterns of risk vary between those born abroad and subsequent generations of immigrants intergenerational subgroups among danish immigrants have recently been examined in relation to the full spectrum of psychiatric disorders 8 elevated risks were observed across the spectrum although specificity of risk by diagnosis varied considerably between the subgroups examined herein we report risks of fatal and nonfatal suicidality and violent criminality among all danish immigrants followed up from adolescence to early middle age selfdirected violence and violence towards other people are strongly correlated harmful behaviours 9 they share common determinants such as alcohol misuse 10 impulsivity 11 family difficulties 12 and socioeconomic adversity 13 and their combined economic costs to society are enormous 14 people with history of criminal violence also have a much greater risk of dying by suicide 15 nonetheless these two interrelated outcomes have rarely been examined together in the same cohort of individuals 1617 for example knox et al reported that their suicide prevention intervention for united states air force personnel appeared to have beneficial effects on lowering risks of homicide and nonfatal domestic violence as well as suicide 17 existing literature on violent criminality among immigrants has originated mainly from the united states where this issue has been of great concern for many decades 18 more recent studies have tended to focus on immigrants from mexico and on the most serious forms of violent crime including homicide assault with a weapon and gang violence 19 evidence is needed regarding immigrants in european societies for more common forms of violent crime for the differential in violence risk between second and first generation immigrants 20 and for effect modification by gender and socioeconomic factors 21 suicidality among immigrant populations has attracted widespread attention in western europe 22 23 24 north america 25 26 27 australia 28 and dubai united arab emirates 29 however as with violent offending their registers socioeconomic sociodemographic data are stored in the registers of statistics denmark it is possible to apply to have access these data at statistics denmark but data export is strictly prohibited one final restriction is that the person who would have overall responsibility for data storing handling and analysis has to be a danish citizen more evidence is needed for variation in suicidality risk between generations of immigrants 263031 for genderbyculture interactions 3233 and for social determinants 2234 this national danish study had three aims 1 to compare absolute risk between first and second generation immigrants foreignborn adoptees and native danes by plotting genderand agespecific cumulative incidence curves to early middle age 2 to estimate sexspecific relative risks for these immigrant type subgroups versus native danes 3 to examine effect modification by higher versus lower socioeconomic status on the basis of findings from previous danish research 3536 we hypothesised elevated risk for both internalised and externalised violence specifically we anticipated observing a greater elevation in risk of attempted suicide in female than male immigrants 633 and the reciprocal pattern by gender for violent criminality 37 and also that relative risks would be greater among second generation than first generation immigrants 19203031 this intergenerational difference could be driven by acculturative dissonance and intergenerational conflict 20 or by loss of traditional communal protective factors in the second generation 38 the studys novelty lies in its nationwide coverage with longitudinal followup direct comparison between suicidality and violent criminality and estimation of cumulative incidence curves for these two adverse outcomes materials and method delineating the study cohort from the civil registration system the study cohort consisted of n 2069114 persons born between 1 st january 1971 and 31 st december 2002 and residing in denmark on their 10 th birthday since 1968 the civil registration system has registered all persons living in denmark 39 among other variables it captures personal and parental identification numbers gender date and place of birth and continuously updated information on vital status the unique personal identification number is used in all national registers enabling accurate interregister linkage classification of adverse outcomes cohort members were linked via their personal identifier to nationwide populationbased registers to obtain information on violent offending suicide attempts and deaths by suicide since 1980 the national crime register has captured information on all criminal charges according to offence type judicial verdict and sentence 40 our definition of interpersonal violent criminality included all convictions for homicide assault robbery aggravated burglary or arson possessing a weapon in a public place violent threats extortion human trafficking abduction and kidnapping rioting terrorism and sexual offences the overwhelming majority of these acts consisted of relatively lowlevel crimes such as assaults street fights and threatening behaviour the study cohort was linked with the register of causes of death 41 to identify suicides using icd8 codes 950959 up to 31 st december 1993 42 and icd10 codes x60x84 from 1 st january 1994 43 by date of death this register contains information for all residents who died in denmark from 1970 onwards cohort members and their parents were linked via their personal identifiers to the psychiatric central research register 44 and to the national patient register 45 to obtain information on suicide attempts using the exact same classification as was used previously 46 identifying these episodes required using different algorithms for different time periods from 1977 to 1986 they were defined as persons diagnosed with icd8 codes e9500e9599 in either the national patient register or psychiatric central research register from 1987 to 1993 as those admitted with a reason for contact code of 4 in the national patient register and after 1994 as fulfilling at least one of the following criteria in either register classification of immigrant status this status was assigned according to the cohort member and hisher parents country of birth as well as mothers country of residence at the time of the persons birth the following subgroups were classified in the same way as previously 8 intercountry adoptees firstgeneration immigrants secondgeneration immigrants by one foreignborn parent secondgeneration immigrants by two foreignborn parents native danes the main purpose of deriving these categories was to enable comparison of associations between distinct subgroups with equivalent nondanish biological parentage ie intercountry adoptees vs first generation immigrants vs second generation immigrants by two parents born abroad persons who were not classified as above were included in the statistical models fitted separately in a missing category classification of covariates cohort members parents were classified as having a history of mental illness if they had received secondary care psychiatric treatment and been diagnosed in ranges icd8 290315 or icd10 f00f99 socioeconomic status data were obtained from the integrated database for labour market research 47 parental income highest educational attainment level and employment status were measured during middle childhood in the year of cohort members 10 th birthdays we stratified socioeconomic status using the following algorithm • lowerboth parents score low in at least one of the three domains income lowest quintile highest education primary school employment status outside the workforce • highermother and father both employed and score high in at least one of the other two domains income highest quintile education higher education • middleall other combinations statistical analyses for examination of suicide and first suicide attempt individuals were followed up from their 10 th birthday until outcome death emigration or december 31 st 2011 december 31 st 2012 whichever came first for first violent crime individuals were followed up from their 15 th birthday until outcome death emigration or december 31 st 2011 whichever came first genderspecific incidence rate ratios for adverse outcome were estimated by log linear poisson regression 4849 adjusted by age group and calendar year period as timedependent variables 50 all other covariates were treated as being timefixed pvalues and 95 confidence intervals were calculated from likelihood ratio tests 50 using competing risks survival analyses 51 the cumulative incidence was calculated as the percentages of persons in the population who had experienced each adverse outcome of interest taking into account emigration or death from other causes 5152 these analyses were performed separately for each gender and immigration status subgroup cumulative incidence at 40 th birthday was also calculated for each outcome separately for males and females ethics statement this study was formally scrutinised and approved by the danish data protection agency by the danish state serum institute and by statistics denmark it was therefore performed in accordance with the ethical standards laid down in the 1964 declaration of helsinki and its later amendments and in accordance with danish legislation results description of the study cohort all immigrant groups combined represented 14 percent of the 2069114 cohort members in total including native danes as well as immigrants 46943 people attempted suicide during the follow up period 1414 died by suicide and 51344 were convicted of committing a violent criminal offense with crude incidence rates of 159 05 and 271 per 10000 personyears at risk respectively there was a preponderance of females among those who attempted suicide and the great majority of suicide cases and violent offenders were males patterns of risk for all immigrant subgroups combined we observed a marked gender difference in risk patterns between the two harmful behaviours for female immigrants relative risks for suicide attempted suicide and violent offending were of a similar order of magnitude for male immigrants relative risk of violent crime was considerably and significantly greater than it was for suicide and attempted suicide overall female immigrants had greater relative risk for attempted suicide than males whereas male immigrants had a far greater relative risk for violent offending than females we had insufficient power to assess whether the relative risk for completed suicide was significantly greater in women than in men we also adjusted the incidence rate ratios for history of secondary care treated parental mental illnesses but this additional adjustment had a minimal attenuating effect on the strength of the observed associations patterns of risk among immigrant subgroups for these finely stratified analyses we lacked adequate power to examine suicide as an outcome cumulative incidence and relative risk for attempted suicide and violent offending stratified by immigrant subgroup are presented in table 2 and in fig 1 male foreignborn adoptees had a particularly elevated risk of attempted suicide this group had a 61 percent absolute risk of experiencing this outcome before reaching their 40 th birthday compared to 35 percent in native male danes all male immigrant subgroups had a significantly elevated attempted suicide risk except for danish born children of two immigrant parents for whom there was no evidence of raised risk in females the highest cumulative incidences for attempted suicide pre40 th birthday were in second generation immigrants with two foreignborn parents first generation immigrants and foreignborn adoptees in these groups the cumulative incidences were greater than 7 percent compared to 43 percent among native danish females in all four exposure groups female immigrants had significantly elevated risk for attempted suicide and the female incidence rate ratios were consistently greater than those for males except for foreignborn adoptees the largest female incidence rate ratio was among first generation immigrants the highest cumulative risks for violent offending were observed among male first generation immigrants and in danish born male children of two immigrant parents compared to 73 percent for native danes modestly raised risks were seen for the other two male immigrant subgroups although these risk elevations were statistically significant nonetheless in female immigrants violent offending risk was raised but not to the same marked degree as in males there was a significant elevation in violent criminality risk for all female exposure categories except for foreignborn adoptees with incidence rate ratios of 18 observed among first and second generation immigrants the cumulative incidences of violent offending by early middle age lay in the range 12 percent for all the female immigrant subgroups examined effect modification by socioeconomic status among males all immigrants combined had a 236 fold increased risk of violent offending compared to native danes we stratified this effect by socioeconomic status and found that within each stratum male immigrants had raised risk of violent offending with the greatest elevation observed in the lower stratum attempted suicide risk was raised among male immigrants of middle and higher socioeconomic status but in the lower socioeconomic group risk was significantly lower versus native danish males in female immigrants attempted suicide and violent offending risks were elevated within each stratum for both outcomes there was a stepwise increase in the magnitude of the observed relative risk with the smallest being for the lower socioeconomic stratum and the largest for the higher one table 3 contains detailed genderspecific stratification of relative risk by socioeconomic status according to immigrant status subgroup some subgroups contained small event counts but it reveals a marked heterogeneity by immigrant subgroup that is masked in fig 2 for instance the relatively low attempted suicide risk among all male immigrants combined was found only in the first generation and in the danish born children of two immigrant parents this apparent protective effect was not seen in male second generation immigrants with only one parent born abroad or in male foreignborn adoptees among male first generation immigrants and danish born male children of two immigrant parents however there was a consistent pattern of significantly elevated violent offending risk across all three socioeconomic status strata when considering these markedly heterogeneous patterns of risk it is important to consider differences in socioeconomic status distribution between the immigrant subgroups thus according to the subgroup denominators more than fourfifths of first generation immigrants and between twothirds and threequarters of second generation immigrants by both parents were of lower socioeconomic status compared with less than a half of second generation immigrants by one parent only and less than a third of foreignborn adoptees discussion summary of main findings suicidality and violent criminality have not previously been examined and reported jointly in a national immigrant cohort our cumulative incidence plots and incidence rate ratio estimates indicate that risks for selfdirected versus externalised violence vary greatly between immigrant subgroups as well as for immigrants versus native danes combining all immigrants together we observed distinctly differential patterns of risk by gender thus in female immigrants relative risk of attempted and completed suicide and of violent offending were of similar magnitude whereas in male immigrants the relative risk for violent offending was much higher than for attempted or completed suicide the overall effect size for attempted suicide was larger in females than in males and it was considerably larger for violent offending in males than in females when we examined specific immigrant subgroups we observed marked heterogeneity thus in men the highest attempted suicide risk was in foreignborn adoptees whereas in women they were in first generation immigrants foreignborn adoptees and second generation immigrants with two parents born abroad risks for both harmful behaviours were significantly elevated in all immigrant type by gender strata examined except for attempted suicide in second generation males with both parents born abroad and violent offending in female foreignborn adoptees in men particularly large risk elevations for violent offending were seen in first generation immigrants and among danish born children of two immigrant parents socioeconomic status modified the observed associations considerably among all female immigrants relative risk increased in a gradient across the lower medium and higher socioeconomic strata for both attempted suicide and violent offending in male immigrants effect modification was also present although the pattern of modification was variable interpretation of findings and comparison with existing evidence the larger elevation in attempted suicide risk that we found among female immigrants and the reciprocal pattern of greater relative risk of violent offending in male immigrations were anticipated however some of our other findings were unexpected we hypothesised higher risks amongst second compared to first generation immigrants yet this was not observed with either outcome in fact first generation immigrants had the largest female incidence rate ratio for attempted suicide and the largest male incidence rate ratio for violent criminality nonetheless we did find elevated risks in second generation immigrants versus native danes which may be partly explained by acculturative stress 53 and dissonance 20 thus second generation youths may experience differential rates of integration compared with their parents sometimes leading to intergenerational conflict and alienation investigators in the united states have reported considerably lower risk of violent offending among recently arrived immigrants versus the native population this apparent protective effect diminished with increasing length of time spent living in the united states and this negative assimilation effect was also observed among second generation immigrants 19 in denmark we found greatly elevated violent offending risk in first and second generation immigrant males that our findings differed so greatly from what has been found previously in the united states could perhaps be explained by considerable variation in baseline risk of violent crime and by differing historic contexts between the two countries thus the united states has a long history of urban ghettoisation and consequent gang violence oftentimes delineated strongly along ethnic lines 5455 by contrast these phenomena are relatively new to the nordic countries which have absorbed large numbers of immigrants for the first time only during the most recent decades emerging evidence from denmark 5657 and elsewhere in scandinavia 58 suggests that territorial marginalisation of young male immigrants could play an important role via the development of violent gang cultures to accumulate symbolic street capital 58 being more likely to have violence inflicted upon them by others in hostile discriminatory environments 59 may also influence some immigrant victims to become perpetrators finally danish residents of foreign background young males in particular may be more likely to have their criminal behaviour detected and be apprehended for it 60 this could arise should they attract disproportionately close attention from law enforcement agencies in the united kingdom for instance this phenomenon has been substantiated by the scarman and lawrence inquiries into stop and search policing tactics applied to young men of africancaribbean descent 61 these dynamic societal processes in a country that historically has a relatively low prevalence of street violence and criminal gangs could perhaps explain the large elevation in violent criminality risk that we found in danish male immigrants there are however no obvious explanations for the relatively modest increases in violent offending risk we observed in second generation male immigrants with one parent only born abroad versus much higher risk seen in the danish born children of two immigrant parents it may be that those with one parent born in denmark are better adapted to danish culture than if both parents were born abroad it would be interesting to consider elevated risks of suicidality and violent criminality among danish first generation immigrants in relation to competing social causation and social selection hypotheses 62 does postmigration racial discrimination and psychosocial stress cause adverse outcome or are immigrants more likely to have antecedent predisposing risk factors 63 alternatively positive migratory selection factors could play a salient role should strongly motivated and resilient individuals be overrepresented among the immigrant population 64 we could not answer this causation versus selection conundrum using the available registry data because they contained no measures of premigration factors it is noteworthy that the largest elevations in violent offending risk were found in male first generation immigrants and in danish born males with two immigrant parents born abroad these two subgroups both have two foreignborn parents therefore the similarly strong effect sizes perhaps indicate that direct exposure to immigration itself is not the chief cause of these large risk elevations and that other factors are likely to explain them it is also worth speculating about the possible mechanisms that may explain the heterogeneous patterns we observed in the genderspecific incidence rate ratios when stratified by socioeconomic status fig 2 showed that male immigrants in the lower socioeconomic stratum had a risk of attempted suicide that was significantly less than in native danes within that stratum whereas for violent offending these male immigrants had the higheststratum specific incidence rate ratio table 3 shows that these patterns were essentially restricted to male first generation immigrants and to those with both parents born abroad cultural factors may be important determinants here many of these male immigrants or their parents could have been born in noneuropean countries where suicidal behaviour is not tolerated 65 or where it is considered to be a sign of weakness or even femininity 32 these findings may therefore suggest that lower socioeconomic status immigrant males more frequently express distress via externalised violence rather than through harming themselves among female immigrants those in the lower socioeconomic strata had the lowest incidence rate ratios for both adverse outcomes and the female effect sizes rose in incremental fashion across the socioeconomic strata this pattern could perhaps be explained by lower socioeconomic status female immigrants especially those originating from nonwestern countries being strongly protected by their parents and other close family members from social stressors and from peers experiencing psychosocial difficulties right up until the age when they marry 66 such close social control and protection may be less likely to occur among young immigrant females in the middle and higher socioeconomic strata strengths and limitations our national epidemiological study was characterised by generic strengths that apply to most scandinavian registerbased epidemiologic investigations including complete record linkage between multiple registers ability to account comprehensively for death or emigration during followup nationwide coverage in the registry datasets and abundant statistical power and precision for examining relatively rare adverse events in a cohort of more than 2 million persons specific strengths of our study included complete country of birth classification for all cohort members and their parents ability to examine absolute and relative risks for multiple immigrant status subgroups and complete ascertainment of hospital treated attempted suicide and convictions for violent criminal offending we could also examine how cumulative incidence increased from older childhood and midadolescence up to the early middle age years this longitudinal approach contrasts with some previous investigations that used more temporally restrictive crosssectional designs 6768 our study findings may have questionable applicability to other western nations specifically those with far longer histories of mass immigration racially demarked urban segregation and gangrelated violent crime other possible generalisability factors concern differences in countries and regions of the world that immigrants originate from and immigration policy variability some countries have highly restrictive immigration policies which may serve to screen out individuals and families who appear predisposed to adverse outcome also we could not assess whether risks of attempted suicide and violent criminal offending were convergent or divergent compared with these risks in immigrants countries of origin such studies have been conducted in relation to suicide 6970 but equivalent data sources do not exist in denmark or other western nations to enable such an assessment in relation to more frequently occurring nonfatal outcomes restriction of the study cohort to persons living in denmark on their 10 th birthday meant that it could not be representative of all first degree immigrants in denmark since many of these individuals arrived in the country at an older age the impact of this potential selection bias is unknown finally although our study was wellpowered for studying attempted suicide and violent criminality it was insufficiently powered to examine risk of suicide stratified by multiple immigrant subgroups conclusion we observed elevated risks for selfdirected violence and externalised violence almost universally across all the immigrant subgroups examined and in both genders this should greatly concern experts across numerous health and social care domains including forensic child adolescent and adult mental health services primary care hospital emergency departments and social services it should also interest those working in law enforcement and correctional and probation services and in urban planning and redevelopment the variable magnitude of relative risks observed between immigrant subgroups indicates the existence of factors that are amenable to positive change and therefore a potential for developing effective interventions for example during 2012 the mayor of london and the english capitals crime reduction board established a partnership antigangs strategy in collaboration with the citys numerous local municipalities the national health service commissioning board the metropolitan police the crown prosecution service and the london probation trust the focus of this initiative is on developing more effective multiagency and crossmunicipality working and data sharing to prevent young people at risk from being drawn into gangs to improve levels of community engagement and to reduce risk of reoffending such an approach could be tackled elsewhere should its effectiveness be demonstrated 71 there is a lack of interventions to reduce risk of selfharm among ethnic minority populations but in order to be effective such initiatives will need to remove barriers that currently prevent these people from seeking help when they encounter psychosocial difficulties 72 further research is urgently needed to identify why some male immigrants in denmark have such an elevated risk of violent criminality whatever mechanisms are involved it seems clear that young immigrants of both first and second generation status face serious challenges and vulnerabilities that western societies need to urgently address and that relative risk patterns for these adverse outcomes vary greatly between the genders and also by socioeconomic status it is necessary to understand the degree to which these heterogeneous risk patterns can be generalised to immigrants living in other countries and researchers should also investigate risk of violence victimisation in this population

immigrant populations in western societies have grown in their size and diversity yet evidence is incomplete for their risks of suicidality and criminal violence we examined these correlated harmful behaviours in a national cohort i compare absolute risk between first and second generation immigrants foreignborn adoptees and native danes by plotting cumulative incidence curves to onset of early middle age ii estimate sexspecific relative risks for these immigrant type subgroups vs native danes iii examine effect modification by higher vs lower socioeconomic statusin a cohort of over two million persons attempted suicides and violent crimes were investigated using data from multiple interlinked registers we plotted sexspecific cumulative incidence curves and estimated incidence rate ratiosin the whole study cohort 1414 people died by suicide 46943 attempted suicide and 51344 were convicted of committing a violent crime among all immigrant subgroups combined compared with native danes relative risk of attempted suicide was greater in female immigrants incidence rate ratio 159 95 confidence interval ci 154164 than in male immigrants 126 and vice versa for relative risk of violent offending in male immigrants 236 ci 231242 than in female immigrants 174 ci 162187 risk for both adverse outcomes was significantly elevated in virtually every genderspecific immigrant type subgroup examined violent crime risk was markedly raised in first generation

introduction management of forest resources in indonesia is regulated in uupk 1967 and ppno 21 of 1970 relating to forest tenure and utilization rights which are classified based on state forest and private forest including conservation forest conservation forest areas include protected forests nature reserves and national parks one of the national park conservation forests is in the sumatran archipelago namely the kerinci seblat national park tnks was designated as a national park based on the decree of the minister of forestry no 192kpsii1996 of 1996 with an area of 1386 million hectares the tnks forest is located in 436 villages directly adjacent to this area this area is very important in the ecosystem of the island of sumatra and in 2004 this area was registered as a world heritage site as the cluster mountainous tropical rainforest heritage site of sumatra together with tngl and tnbbs the tnks area spans across four provinces namely bengkulu west sumatra south sumatra and jambi the kerinci seblat national park conservation area is in the bengkulu province area in the rejang lebong and lebong regencies pal eight village rejang lebong regency is one of the villages around the tnks area with the dominant ethnic rejang community since 2000 tens of thousands of hectares of forest areas have been converted into agricultural plantation and mining lands in the tnks forest in the village of pal eight this phenomenon shows a high level of concern about the sustainability of conservation forests and even creates social conflict between communities living around the forest and the government observations made by researchers in 20102012 found various damages due to timber looting and land encroachment for plantations timber looting and forest encroachment due to lack of control from the authorities there is a tendency for the orientation of local governments to prioritize investors with large capital so that they can increase pad this concept is profitable in short terms but does not take into account the sustainability of forest resources this action is generally carried out by people from other areas who have business capital such as in the case of encroachment on the area where they mobilize workers to clear land for coffee oil palm and other plantations these symptoms will increase excessive exploitation of the tnks conservation forest resources so there was a change in the nomenclature of the ministry of forestry to environment and forestry in 2016 making the management of the tnks area no longer left to third parties or members of the tni but regulatory authority in forest management and utilization was given to center for security environmental law enforcement and forestry in palembang south sumatra this institution handles various programs including forest rehabilitation programs this program involves the community around the tnks forest area with a pattern of economic empowerment such as replanting native plants in the tnks forest covering an area of 3500 hectares of the tnks area in rejang lebong covering an area of 26000 hectares iii bengkulusouth sumatra in rejang lebong regency 2016 this means that the form of the tnks forest conservation policy involves the community as a support for the existence of forest ecosystems substantially the governments tnks forest management policy does not separate the interests of the tnks forest conservation ecosystem from the people who live around the forest area communities around the tnks forest by the government are developing community development efforts in the form of coaching not to make tnks forests a source of life but management of conservation forests the logical consequence of the implications of the government policy model is that the area of farming land has narrowed so that the pattern of business and work opportunities has decreased this results in changes in the lives of communities around the forest especially women in family units in accessing the resources needed to maintain social functionality the social function of women in the family unit or group and part of the community members who live around the tnks forest area can be maintained but on the other hand it does not conflict with government policies this can be done as a strategy through the development of community institutional strength one of which is the strength of social capital social capital owned by members of society including women exists at the individual social group organizational community ethnic and state levels the contribution of social capital can provide strength in the life order of women around the tnks forest because social capital has elements of values norms and rules that are located in the social structure and then in turn the social structure guides and controls all actions or activities that occur on maintaining social functionality the network of cooperative relations between women in an organized society guarantees the continuity of social functionality and even at the same time gives boundaries and selfidentification as a certain social whole thus the perspective of social capital based on the manifestation of women in relationships between individuals in families or groups relationships between citizens in the community in building social functionality the pattern of relationships is organized by bonding bridging and linking that have the purpose of social action thus social capital can be used as resources in strategies to maintain social functionality oriented towards community development based on this phenomenon the emphasis in this study is to examine social capital as a strategy in maintaining the social functionality of women around the tnks conservation forest area in addition there has been no research on the problem of women in forest resource management even though social symptoms related to conflicts in conservation forest areas tend to have more clashes between the government and womens carrying capacity in communitybased forest resource management approaches the question of this research is formulated in the formulation of problems the aim of research on social capital as a strategy for maintaining the social functionality of women who live on the outskirts of the tnks forest is a qualitative research study that will provide the necessary contribution as a foundation and pattern of problem solving related to women maintaining social functionality in social life in addition the results of this research are material for theoretical studies among academics social sciences and community development and as material for scientific studies both in the context of the development of pure science and the development of applied science through this research it is expected to be able to challenge the theoretical perspective of social capital conceptually related to the mechanism of social functionality method types of research and research limitations this study uses a qualitative method which is a research design that is open to the conditions in the field the research concentration is social capital as a strategy in functionality for women who live on the outskirts of the tnks pal depalan forest rejang lebong regency the elements of social capital are examined from the aspects of bonding bridging and linking which originate from woolcoks theory the elements of social capital are a force that is used in reciprocal relationships between women in the household unit to maintain social functionality the concept of functionality refers to the way individuals or groups maintain social functioning namely they can meet basic needs can solve problems and carry out roles in accordance with the various statuses inherent in women data collection techniques participatory observation namely observations made by researchers by means of researchers participating in a limited way in certain social events into the object being observed before making observations make a list of concepts that will be observed by participating in activities carried out by village elites availability of social capital related to bonding bridging and linking forms of social capital inherent in the structure of land tenure structures in addition to paying attention to the sources of social capital that have the potential to support the functional process of citizens in social life field notes are recording data in observations used as a tool by researchers in nonparticipating observation situations observations in this case are relatively free to make notes and are carried out at the time after the observations are made the notes are in the form of categories in the elements of social capital that are used as a strategy in maintaining womens functionality interviews are conversations and questions and answers directed to achieve research objectives interviews in qualitative research were conducted to gain knowledge about subjective meanings understood by individuals groups according to the theme of the study interviews conducted informally namely the interview process is based on spontaneous questions in the interaction in general the researcher interviews with informants equipped with very general interview guidelines that are oriented towards the phenomena needed and aspects that must be discussed open standard interview document study this study is one of the data collection methods used to trace historical data documentary materials in the form of diaries personal notes letters reports in addition data collection is classified into two stages namely the exploratory and descriptive stages collecting data in a systematic way according to context so that accurate and holistic information is accumulated data analysis data analysis had already started while in the field namely starting from the classification process and data categories between what was obtained from the documentation with data obtained through interviews and observations related to the components of social capital in womens social functionality the data were analyzed qualitatively through 3 processes namely reduction presentation and drawing of conclusions which move back and forth between the three processes in an interactive loop figure 1 components of interactive analysis this qualitative analysis process is an analysis model that is not one by one but in an integrative manner for example collecting data first and then analyzing and presenting it but collecting data then the data is reduced to be presented in conclusions but the conclusions are checked back to the original data so that it will not be wrong in concluding something this analysis mechanism is comparative in nature which aims to be able to formulate the concept of social capital as a strategy in maintaining the functionality of women around the tnks forest results and discussion social capital is an important resource in the continuity of social life bonding is exclusive as a bond that is very strong in the interests of an action goal to maintain social functionality especially for women who live around the tnks forest between homogeneous groups such as family members and close relatives bridging is inclusive which refers to relationships between groups distant friends partners and colleagues this bond is actually rather weak but it is really needed if there is an opportunity to mobilize linking social capital refers more to the relationship between individuals between groups at different social strata in a hierarchy according to power wealth and social status accessed by different groups in a formal collaboration with a vertical system in other words linking social capital is a bond that unites people in an important position landless and narrow land household social capital social capital in the form of a type of bonding for women in landless and narrow land farming household units is in the form of a bond that facilitates maintaining social functionality namely related to norms of collective action in the management of indigenous forests existing values and norms prioritize togetherness in obtaining economic resources needed to meet the necessities of life such as the use of customary forest land with secondary crops and ground rice in addition they make use of tnks forest plants in the form of combrang flowers resin pine collective action refers to the addition of labor for example helping during harvesting household production on managing land under lease status in various activities that have economic value collectivity between landless and narrowland strata households is obtained through social networks and mutual trust based on kinship and region of origin this network is a form of bridging social capital that bridges them to overcome problems that are closely related to the data collection conclusion data presentation data reduction triangulation second function of social functioning solving problems both material and nonmaterial such as school fees sickness credit and morals mutual respect relations between social strata groups are recognized that relations within a hierarchy have very strong exchanges for accessing resources compared to groups outside the community while the type of social capital in the form of linking to this stratum tends to be bound by a unified position in developing roles as citizens of the community such as they identify as selfhelp groups actively helping each other and contributing to building existing infrastructure in the community or helping individuals or families in marga village magic the purpose of their actions is to develop their role in maintaining social functionality so that they are recognized and can participate to guarantee survival social capital in carrying out social functionalities based on this strata is in the form of collective action which has economic value to meet basic needs social network is an element of social capital that is classified as bridging based on kinship and area of origin or place of residence that strengthens them to trust each other this is manifested in a labor exchange system such as helping each other especially in solving economic and noneconomic problems this type of social capital in the form of linking to this stratum further strengthens the position as an active selfhelp group such as mutual cooperation friendly relations and mutual respect the elements of this type of social capital are very important resources in carrying out social functionality womens perceptions of the resilience of social functionality as a community unit in general are considered to be very united with the characteristics of the differences between women among members of the community who live in pal 8 village who do not own land and have narrow land neither large nor very small this condition is understandable because most of the women in pal 8 village are in relatively low strata public visible differences can be seen from ethnicity race ethnicity and the differences between natives and immigrants medium and large land household social capital women in the household strata with medium land and large land are categorized as socially upperclass strata this social stratum has correlated social capital in accessing resources as the purpose of carrying out social functionality social capital in the form of a bonding type in this stratum is more likely to be bound by norms based on social concern and solidarity in the form of activities to maintain water supply this activity emphasizes values that have a social dimension namely for the benefit of the community as a whole the form of social concern in the activity of maintaining water supply is individual awareness in a group unit that grows continuously in social relations between strata of women in pal 8 rejang lebong social concern is manifested in the form of cooperation in maintaining forest plants and carrying out reforestation in the tnks forest and customary forest adequacy of water supports the stability of social functionality the strength of this norm connects available resources at the local level and serves the interests of every citizen especially the adequacy of meeting basic needs the form of concern for these strata is building tertiary irrigation so that there is sufficient water when managing rice fields and ensuring sustainable water sufficiency apart from that social care among households with medium and large land strata is followed by social values in the form of a set of beliefs socialized through religious values which are manifested in the form of earth alms the concept of sedekah bumi has a philosophy that all available resources to carry out social functionality come from the creator the consequence of this is that a safe community condition is created and the property rights of all members of the community are protected thus the community is able to control the forest environment social and economic environment that supports social functionality for women in particular and society in general women in the household unit the widespread type of bonding social capital in the form of social care in the form of solidarity especially for economic activities bridging capital is more about strengthening participation in building social integration within forest units and communities the mechanism of social care forms a social network based on place of residence such as neighbors kinship which is long term in nature and is followed by mutual responsibilities bridged networks based on place of residence are a type of bridging social capital this type of social capital places more emphasis on empowering citizens to be able to overcome and reduce the problems they face bridging social capital supports social linking capital in the form of economic business mechanisms in the form of perennials cultivation and cooperatives partnering with kppl the strengthening of selfhelp groups is controlled by village elites priests traditional leaders the village elite facilitated the involvement of all residents to participate in responding to community needs that were relatively conditional in nature such as establishing savings and loan cooperatives helping with education in schools regular recitations implementation of roles in these strata is not only horizontal but also vertical this means that the purpose of action between citizens to carry out social functionality involving women is not homogeneous but heterogeneous from various social strata conclusion social capital is a resource that is used as a functional strategy for women that tends to be based on land tenure the area of land tenure after the tnks area has been determined women in the family unit manage the customary forest land communally for them forests are a sustainable element of life and forests not only function economically and socially but also have spiritual values households with narrow land and no land tend to be a type of bonding social capital with a pattern of relationships in carrying out social functionality in the form of economic work group units based on the area of origin and place of residence social capital in the form of bridging emphasizes communalbased relationship patterns in water rescue however social linking capital is in the form of an economic business mechanism that partners with kppl through strengthening in selfhelp groups households with large land area types of social bonding capital in the form of social care in the form of solidarity and elements of bridging capital are strengthening in participation in building social integration in community units around forests such as sedekah bumi meanwhile the type of social capital linking to this stratum is in the form of social groups controlled by village elites

this study focuses on social capital as a strategy for womens functionality in the forest suburbs of tmks pal eight rejang lebong regency communities especially women who live around the periphery of the forest have undergone changes in the area of control of agricultural land because there are provisions for the boundaries of the tnks forest area and this is related to social functionality the purpose of social capital research as a strategy to maintain the social functionality of women living on the edge of tnks forest is a qualitative research study that will provide the necessary contribution as a foundation and pattern of problem solving related to women maintaining social functionality in social life participant data collection through direct observation and indepth interviews and documentation the data were analyzed with an interactive model based on qualitative interplay inductively with an emic approach the results showed that social capital is a resource that is used as a functional strategy for women tending to be based on land tenure the area of land tenure after the tnks area is determined women in the family unit manage customary forest land communally for them forests are an element of sustainable life and forests not only function economically and socially but also have spiritual value households are narrow and unbiased with a pattern of relationships in carrying out social functionality in the form of economic working group units based on region of origin and place of residence

introduction a global recession rapidly increasing economic inequality and perceptions of a disappearing middle class make the prospects of declining socioeconomic fortunes a growing concern within the united states at the same time the increasing rewards of a college degree and expanding enrollments of women and firstgeneration college students suggest the potential for upward mobility in educational attainment though the study of the intergenerational transmission of education has a long history within sociology and criminology contemporary studies of its relationship to crime are surprisingly few in number that educational attainment is negatively associated with crime is fairly well established at the secondary level studies have shown dropping out of high school to predict delinquency and crime and that vocational coursework and better teacherstudent ratios reduce the likelihood of adult incarceration with respect to postsecondary education research has found years of education to prevent adult incarceration and college attendance to prevent adult offending though some research suggests the relationship between high school dropout and offending may be driven by unobserved selection or vary by the reasons a student drops out other studies have exploited variation in compulsory schooling laws to indicate a more causal relationship studies of crime across the life course focus attention on adult transitions such as marriage and employment as potential turning points associated with reduced criminal behavior few studies however have considered educational completion as an adult role that might be associated with changes in crime one exception is ford and schroeder who found pursuit of any higher education to be associated with desistance among respondents with higher juvenile delinquency in the past this finding is suggestive of an important distinction many studies of role transitions implicitly assume that they represent a turning point in the life course this assumption is fairly plausible in studies based on institutionalized samples in which many have dropped out of the educational system and for whom the alternatives are poverty homelessness or a return to prison in general population samples in contrast whether completing high school or a college degree is really a turning point likely depends on how it relates to an individuals longer socioeconomic trajectory and compares to the educational attainments of parents this raises the concept of intergenerational educational pathways for those growing up in poverty any achieved education may represent a positive turning point in the life course for those growing up in middle class or more advantaged circumstances however the meaning of education may be contingent on whether the achieved level represents upward or downward mobility within a longerterm intergenerational trajectory few previous studies have considered the relationship between educational pathways or educational mobility and crime one exception by savolainen and colleagues found little evidence that educational mobility was associated with decreased crime in a finnish sample using data from the national longitudinal study of adolescent to adult health this study applies a life course perspective to analyze the relationship between intergenerational educational pathways and change in crime between adolescence and early adulthood we hypothesize that upward educational pathways will be associated with reduced crime and that downward pathways will predict increases in crime over the life course literature review education and crime criminological studies have long posited and largely observed a negative relationship between various measures of educational success and delinquency crime and incarceration for example research by thornberry et al showed that dropping out of high school was positively associated with future criminal behavior which contrasted with earlier research observing decreases in delinquency in the shortterm immediately following dropping out work by jarjoura found that the consequences of dropping out depended on the reasons one dropped out and social class with dropping out more strongly associated with offending among higher income youth though research by sweeten et al using the national longitudinal survey of youth suggests the correlation between high school dropout and delinquency may be spuriously driven by unobserved factors bjerk used propensity score models to show that those who felt pushed out of school were more likely to offend than those pulled out of school by family and other obligations other studies have exploited variation in compulsory attendance laws to show that years of education is associated with decreased offending and imprisonment research by arum and colleagues further shows that years of education and pursuit of postsecondary education reduce an individuals risk of incarceration this work also suggests that the importance of higher education has grown over time using data from the national youth survey ford and schroder found that pursuit of any education beyond high school was associated with less offending among those who were delinquent in adolescence lastly hagan and parker used a longitudinal toronto sample to show that intergenerational continuities in educational disinvestment were associated with higher delinquency in the next generation educational pathways and crime hagan and parkers study is unique in its consideration of intergenerational patterns of educational attainment indeed a limitation of much of previous research has been a tendency to treat the relationship between education and crime statically very few have considered how intergenerational changes in educationthat is educational pathwaysare related to crime in fact the authors of one recent exception noted we are not aware of a single prior study that examines individual differences in criminal behavior from the perspective of intergenerational social mobility which they measured in terms of education using data from a finnish birth cohort they concluded that neither downward nor upward educational mobility were significant predictors of crime in the transition to adulthood however they did find that parents educational resources buffered the effect of ones own educational track on crime although not focused specifically on educational mobility some of the research previously reviewed on the relationship between educational attainment and crime is suggestive of mobility effects for example jarjouras finding that dropping out of high school was more consequential for offending among middleclass youth is consistent with the idea that downward mobility creates strains conducive to crime similarly research showing that the relationship between dropping out and crime depends on the reasons for dropping out also hints at the role of educational mobility versus immobility a consideration of educational mobility is particularly important in light of the continuing expansion of higher education in the united states as well as its increasing value relative to a high school degree for instance the percentage of 18to 24yearolds enrolled in postsecondary education has risen from about 25 percent in 1965 to 41 percent in 2012 with even sharper increases among women women now outpace men in both enrollments and college completion in part due to the increasing income returns to higher education these trends suggest a considerable degree of intergenerational educational mobility as do concerns regarding the challenges of being a firstgeneration college student research also suggests that fouryear college completion is an important leveler of opportunities whereas the increasing importance of educational attainment for risks of incarceration also points to the need for additional research in this area the concept of intergenerational pathways draws upon the life course perspective which conceives of lives as composed of multiple interrelated trajectories with trajectories accentuated or redirected by sequences of life course transitions in some cases transitions such as dropping out of high school or transitioning between high school and college represent a continuity of advantage or disadvantage for example recall hagan and parkers elaboration of intergenerational processes of educational capitalization versus disinvestment and their implications for crime sampson and laubs concept of cumulative disadvantage similarly describes how early problem behavior knifes off future opportunities such as completing high school or going to college which in turn produces a continuity in offending over time in others cases transitions may represent positive or negative turning points that redirect personal or intergenerational trajectories how do educational pathways matter there are a variety of mechanisms through which particular educational pathways might be expected to increase or decrease crime over the life course perhaps most obvious is the fact that educational attainment promotes employment and earnings past research has generally found a negative relationship between employment and criminal activity whether due to greater economic resources changes in routine activities or increases in prosocial bonds at the same time a range of factors may moderate the relationship between employment and crime for example the duration and timing of employment may moderate its crime reducing potential in addition jobs providing higher wages employee satisfaction and opportunities for advancement are more likely to reduce crime thus to the extent that upward educational pathways promote employment opportunities characterized by greater stability and quality we expect them to be associated with lower crime conversely to the extent that downward educational pathways are associated with economic stressors such as problems paying bills and food insecurity they may motivate crime prior research has also shown that other adult transitions such as marriage may promote desistance again depending on their stability and quality demographic research also finds that marriage is an increasingly stratified institution with higher marriage and lower divorce rates among those with college degrees thus we will also examine whether family formation transitions such as marriage cohabitation and child rearing mediate the association between educational pathways and change in crime within the study of social mobility researchers often make a distinction between destination effects and consequences that can be attributed to mobility itself the previously discussed gains in employment and marriageability are perhaps best thought of as benefits accruing to the destination of having completed college others argue however that mobility itself has consequences that may extend to crime the classic example is sorokin who argued that any change in social status uproots the individual and causes conflicts between new and old norms that may produce psychological distress while there is little empirical support for sorokins general hypothesis other research suggests that the direction of mobility mattersthat is that downward mobility is particularly stressful that emotions are a motivator of crime is a central tenet of general strain theory which asserts that the experience of strain produces negative emotions which in turn lead to coping responses such as crime strains include losses of valued resources the occurrence of negative experiences and other forms of goal frustration strains that are perceived as unjust or high in magnitude associated with low social control and that create incentives for crime are most likely to evoke criminal responses downward educational pathways likely result in a loss of economic resources and social prestige present new negative experiences in the form of economic difficulties and possible social disapproval and may represent the frustration of middleclass goals negative pathways may also be perceived as unjust particularly for those from advantaged backgrounds who may consider the american dream their birthright indeed as newman argues in falling from grace downward intergenerational mobility not only has consequences for the individual but also represents a disrupture of a family mobility project our focus on educational pathways as distinct from educational attainment also relates to agnews contention that subjective strains may be more consequential for crime than are objective strains subjective strain refers to events that an individual dislikes whereas objective strain refers to life events that are regarded by most individuals as stressful we contend that low educational attainment is an objective strain whether it is a subjective strain likely depends on whether it represents a negative pathway or a continuation from ones upbringing to capture this subjective side of education we will incorporate a measure of subjective social standing less often considered are the potential positive consequences of upward mobility educational attainment is known to promote a sense of selfefficacy which past criminological research has shown to be negatively associated with crime educational attainment is also associated with lower depression in part through promoting a greater sense of control in dealing with life stressors with respect to the benefits of upward educational mobility however concerns regarding the adjustment difficulties of firstgeneration college students temper our expectations regarding large improvements in selfefficacy or psychological wellbeing potential selection effects a focus on intergenerational patterns of educational attainment raises the important concern of potential selection effects perhaps it is not going further in education than ones parents that drives changes in crime but rather unobserved characteristics of individuals that select them into particular educational pathways gottfredson and hirschis general theory for example suggests that adolescent characteristics indicative of selfcontrol may drive ones entry into postsecondary education and thus render the hypothesized relationships between educational pathways and crime spurious thus while debates regarding how best to operationalize selfcontrol or whether selfcontrol is fixed or fluid are ongoing selfcontrol remains an important explanatory mechanism in criminological research other research indicates that poor test scores and lower grades are positively correlated with subsequent delinquency crime and incarceration summary of the present study to summarize the present study assesses the relationship between specific intergenerational educational pathways and change in crime between adolescence and early adulthood within a recent and nationally representative sample of the united states for the reasons outlined above we expect upward educational pathways to be associated with decreases in crime between adolescence and adulthood conversely we hypothesize that downward educational pathways will be associated with increases in crime across the life course in addition we assess the role of several mechanisms through which these pathways may be associated with changes in crime including adult role transitions economic strains and social psychological characteristics in adulthood including depression selfefficacy and subjective social standing lastly reflecting concerns regarding selection effects we examine the role of individual characteristics such as grades vocabulary test scores and educationrelated selfcontrol moreover by controlling for prior delinquency and focusing on change in crime we hope to further minimize the role of stable individual differences data and measures data data are from add health a schoolbased study of adolescents in the united states grades 7 to 12 started in 1994 to 1995 three subsequent waves of data collection have been conducted the last of which was collected in 200708 when respondents were largely between 25 and 32 years of age data were collected from adolescents and their peers as well as their parents siblings and school administrators this research incorporated data from waves i and iv dependent variable crimeones involvement in crime was measured at wave iv based on nine selfreported indicators questions asked respondents how often they did any of the following in the last 12 months deliberately damage property that didnt belong to you steal something worth more than 50 go into a house or building to steal something use or threaten to use a weapon to get something from someone sell marijuana or other drugs steal something worth less than 50 take part in a physical fight where a group of your friends was against another group get into a serious fight and hurt someone badly enough in a physical fight that he or she needed care from a doctor or nurse each of these items was coded as 0 if the event never happened 1 if the event happened 1 or 2 times 2 if the event happened 3 or 4 times and 3 if the event happened 5 or more times a sum of all nine responses was used to create the final delinquency and crime variable given that each of the nine items ranges from 0 to 3 the final count variable had a possible range from 0 to 27 though the observed values ranged from 0 to 22 independent variables delinquencydelinquency was measured at wave i in the same manner as the dependent variable with questions asking respondents to report their involvement in the same nine items delinquency ranges from 0 to 27 educationrespondents education at wave iv is based on selfreports of the highest degree completed education was coded as 1 for those with less than a high school degree 2 for those with a high school degree 3 for those with some college 4 for those who have completed a fouryear degree and 5 for those who completed at least some graduate school this same coding scheme was used for measuring the attainments of the respondents parent at wave i the only difference being that parents education is based on the highest attainment of either parent educational pathwayseducational pathways can be observed in a transition matrix crosstabulating parents education and respondents achieved education a complete loglinear analysis of the relationship between parent and respondents education is beyond the scope of this analysis yet it is clear that parents and respondents educations covary as evidence of stability across generations note that 51 percent of those whose parents attained some college attained the same level themselves with respect to upward mobility note that among those whose parents did not graduate from high school 79 percent completed a high school degree or more and 11 percent finished college or a graduate degree there is also evidence of considerable downward educational mobility such as among the 61 percent whose parents completed a fouryear college degree who did not complete college themselves summarizing the transition matrix into its components of parents education achieved education and educational pathways raises methodological challenges although a simple measure of the difference between achieved and parents educations can be calculated it is not possible to include it in a model that also controls for parents and respondents educations because the three measures are a linear combination of each other we address this issue in several ways first to minimize the effects of small changes in education we collapsed our measures into three levels of low middle and high education not completing a high school degree or its equivalent was considered low education having a high school degree andor some college placed an individual in the midlevel and having a fouryear degree or higher was treated as high education next we created nine indicator variables representing the possible combinations of parents and own low middle and high levels of education though this approach may not allow a simultaneous assessment of the independent associations of origins destinations and mobility we are able to make specific comparisons of respondents following educational pathways that vary in direction and magnitude in the first set of models to follow the category of stable middle education is used as the excluded comparison group in later analyses we stratify by parents education and compare pathways within each level of parents education one concern raised by collapsing the original 25 cells matrix into nine educational pathways is the potential loss of variation table 2 shows average crime by the original five by five categorization of parents and respondents educations though there appears to be some variation lost through collapsing categories it does not appear to be a large amount for example we performed formal tests of mean differences in crime for those who achieved a high school degree versus those completing some college and found the difference to not be statistically significant similarly there was no statistically significant difference in crime between those completing a fouryear degree versus those who went on to complete some graduate school nevertheless to further bolster our findings with regard to the association between educational pathways and crime we also assess the robustness of our results to alternative measurement and model specifications these include models employing the simple educational change score and controls for family socioeconomic status educational attainment and current employment status models with dichotomous indicators of upward and downward changes and controls for family ses and achieved ses and models in which the definition of low for the respondents achieved education included both less than high school and a high school degree reflecting structural mobility that might change the meaning of low education over time in all cases we found evidence of associations of educational pathways with crime in ways that are consistent with the main results presented here additional covariatesdemographic controls included a measure of age at wave iv a dichotomous indicator of sex and five mutually exclusive indicators of race and ethnicity including nonhispanic white nonhispanic black nonhispanic asian nonhispanic american indian or other race and hispanic origin a dichotomous indicator for an individual living with both of their biological parents at wave i was also used other dichotomous familial variables were measured at wave iv including being married with and without children cohabiting with and without children and being single with and without children though our focus is on educational attainment other measures of parents ses were employed a continuous measure of parents occupational status at wave i was included neighborhood disadvantage in adolescence was assessed using data from the add health wave i contextual database it was constructed as the average of four census tract measures including the proportion of adults unemployed proportion of families below poverty proportion of households receiving public assistance and proportion of households headed by a single mother the respondents wave iv labor force participation status was assessed with indicator variables including currently employed unemployed disabled or sick retired or homemaker active in the military and currently a student a dichotomous indicator was created for respondents who had received any public assistance welfare payments or food stamps a similar control variable was included to assess parents receipt of public assistance at wave i selfefficacy was measured at wave iv as the average of four likert scale questions asking how often in the past 30 days the respondent felt that you were unable to control the important things in your life felt confident in your ability to handle personal problems felt that things were going your way and felt that difficulties were piling up so high that you could not overcome them a measure of ones perceived ses was assessed at wave iv by asking respondents where they see themselves on a hypothetical social ladder compared to others in the united states depression at wave iv was measured as the average of five statements that tap depressive symptoms ranging from 0 to 3 respondents were asked how often during the past seven days you could not shake off the blues even with help from your family and your friends you felt depressed you felt sad you enjoyed life and you felt happy to assess economic problems a count variable summed events that had occurred to the respondent in the 12 months preceding wave iv including you went without phone service due to a lack of money you did not pay full rent or mortgage due to a lack of money you were evicted from your apartment or house due to a lack of payments you did not pay the full amount of utility bills due to a lack of money you had services from the gas or electric company turned off and you worried food would run out due to a lack of money the issue of potential selection into educational pathways is addressed in several ways first we include several measures tapping into prior positive and negative educational experiences we include a continuous measure of the respondents selfreported grade point average we also include a 3item measure of educationrelated selfcontrol previously employed by beaver ratchford and ferguson composed of items that asked adolescents how often since school started this year they had trouble getting along with your teachers paying attention in school and getting your homework done the items are averaged to create a scale in which higher values are indicative of low educational selfcontrol we also control for respondents scores on the add health picture vocabulary test a 78item abridged version of the peabody picture vocabulary testrevised the items are standardized to follow an intelligence score metric centered on 100 the selection issue is further addressed in models controlling for prior delinquency which helps to capture stable unobserved differences associated with the outcome table 3 provides descriptive statistics for all measures analytic strategy given the nature of the dependent variable negative binomial regression models were conducted negative binomial regression is best suited for a dependent count variable with skewed variability which is the case here the similarities in the measures of crime in adulthood and delinquency in adolescence allow for a lagged dependent modeling strategy in some models which helps to control for stable differences between persons missing data were handled using multiple imputation via the proc mi procedure in sas 94 with five imputations needed to achieve the desired degrees of freedom no additional covariates were included in the imputation process aside from the variables present in the full models the weighted analytic sample after multiple imputation yielded an n of 14742 as 895 cases had missing or nonpositive weights all models employ the add health longitudinal sample weights that adjust for differential probabilities of sampling and retention results bivariate relationships an analysis of variance implementing tukeys multiple comparison of means was conducted at the bivariate level and the distribution of crime by educational pathways was reflective of our hypotheses regardless of ones educational pathway the highest reports of crime were among those who achieved low levels of education while those who achieved high levels of education reported the lowest crime with regard to stability at respective levels of education crime was highest among those who were stable at low levels and lowest among those who were stable at high levels of education as expected those whose parents had high levels of education but who did not finish high school themselves reported the highest involvement in crime the difference in crime between those who moved from high to low in education compared to those stable at low levels was statistically significant consistent with our expectations multivariate models table 4 presents the results of negative binomial regression models in which the coefficients can be interpreted as percentage change in the expected crime count for a oneunit change in the independent variable after computing exp 1 for example net of all other factors in model 1 being male increased the expected crime count by a factor of exp 1 roughly 197 percent model 1 includes eight of the nine indicators of change in education with intergenerational stability at midlevels of education the excluded category as well as demographic and socioeconomic controls from wave i this model does not include prior delinquency in adolescence so it is assessing differences in crime in adulthood not change in crime we begin by focusing on those experiencing intergenerational changes in educational attainment compared to being stable at midlevels of education an intergenerational increase from the midlevel to completion of a fouryear degree decreased ones expected crime count by a factor of exp 1 roughly 51 percent this is an important result as respondents who graduated from a fouryear college but whose parents only achieved some college represent a sizable subgroup within the sample conversely negative educational pathways from either high or midlevels of parental education to not completing high school were associated with higher expected crime counts finally intergenerational continuity of college completion compared to midlevels decreased ones expected crime count by a factor of exp 1 roughly 48 percent to partially address the issue of the selection of delinquent adolescents into particular educational pathways model 2 added controls for adolescent delinquency gpa in high school ahpvt scores and low educational selfcontrol the inclusion of past delinquency makes it a lagged dependent variable model and shifts the focus of other independent variables to predicting changes in offending between adolescence and adulthood though past delinquency ahpvt scores and educationrelated low selfcontrol were all associated with changes in crime our indicators of intergenerational educational pathways remained associated with crime in a similar pattern to that of model 1 with decreases in education increasing the expected crime count and increases in education associated with reduced crime next we controlled for measures of employment status in adulthood as well as family transitions such as marriage cohabitation and coresidence with children to see if these partially explain the relationships between educational pathways and crime though some coefficients were slightly attenuated in size most of the relationships between intergenerational change in educational attainment and crime retained statistical significance when controlling for familial and economic characteristics at wave iv for example net of all other covariates in model 3 moving from mid to high levels of education decreased the crime count by exp 1 roughly 43 percent however the coefficient for the association of the mid to low pathway with crime was attenuated by about 21 percent and fell out of statistical significance suggesting a degree of mediation note also that those following the low to mid educational pathway were now observed to have a higher expected crime count by a factor of exp 1 roughly 28 percent all family types other than married with children and unemployment were associated with increases in crime whereas being in the military was associated with decreases in crime compared to nonmilitary employment in model 4 we tested whether the associations between specific educational pathways and crime were mediated by economic problems and welfare receipt in adulthood all previously significant pathway coefficients were attenuated in size with mediation strongly suggested for both cases of downward mobility for example the coefficient associated with the high to low pathway decreased from 46 to 26 and was no longer statistically significant although coefficients associated with upward pathways were also reduced in magnitude moving from mid to high and stability at high levels remained associated with reductions in crime lastly we controlled for several social psychological concepts including selfefficacy perceived ses and depression that may help explain the remaining associations between educational pathways and change in crime though selfefficacy and depression were both associated with changes in crime in the expected directions they only slightly attenuated the magnitude of the educational pathway coefficients even after an extensive list of covariates moving from mid to high levels of education remained associated with a decreased expected crime count by a factor of exp 1 roughly 34 percent sensitivity analyses to further examine the role of educational pathways we ran an additional set of models that are stratified by low middle and high levels of parents education our primary motivation for these analyses was to assess whether associations between change in educational attainment and crime depended on where one started in adolescence stratifying also allowed us to make additional comparisons between groups not limited to the stable mid categorythat is the reference categories in these models represent stability at each level of parents education beginning with those whose parents had less than a high school education in model 1 of table 5 there were no differences associated with completing higher levels of education although of theoretical interest this is not empirically surprising given the lack of associations for these groups in the previous models from table 4 considerably more action however was observed within the other subgroups among those whose parents had finished high school andor some college both upward and downward changes in education were associated with crime in the expected directions compared to those who completed high school those who did not finish high school had higher crime in adulthood whereas those completing a fouryear degree reported lower levels of crime finally among those whose parents were college educated not finishing high school and college were both associated with higher levels of crime thus on the whole these models suggest that intergenerational changes in education both upward and downward are robust predictors of crime controlling for other factors as this is a general schoolbased sample and we were interested in how educational pathways might predict change in crime for all respondents our main results are not necessarily about desistance from crime as a further sensitivity check however we ran models stratifying for whether respondents had engaged in any delinquency at wave i the results are consistent with our main findings however a few details are worth mentioning among those who were delinquent at wave i upward intergenerational pathways were associated with lower levels of crime in adulthood which is suggestive of desistance at the same time one negative pathway specifically from high to low was associated with a higher crime count among those not engaging in any delinquency in adolescence both positive and negative pathways were associated with crime in expected directions one exception was observed for those whose parents had less than a high school diploma and who completed high school or some college themselves this upward pathway was associated with a higher crime level in adulthood discussion this study represents one of the first examinations of the relationship between intergenerational educational pathways and change in crime between adolescence and adulthood in the united states overall our results suggest that intergenerational change in educational attainment plays a significant role in predicting both crime and changes in crime between adolescence and adulthood consistent with our hypotheses multivariate analyses showed that downward educational pathways were predictive of increases in crime whereas upward pathways were associated with decreases in crime our findings have implications for the broader literature on educational attainment and crime for example contrary to the idea that not completing high school would automatically be associated with higher crime we found that it depended upon ones parents education with those experiencing downward educational mobility into the less than high school category exhibiting increases in crime in adulthood this is consistent with previous research which found high school dropout to be more consequential for nonpoor youth our finding that high school dropouts whose parents were also high school dropouts did not engage in more crime also seems consistent with the research by bjerk who found those who are pulled out of school to work or take care of family did not engage in higher crime than similarly situated counterparts who finished high school the lowest crime was observed among those experiencing intergenerational continuity in completion of higher education this finding resonates with hagan and parkers life course capitalization theory and their findings that intergenerational investments in education have implications not only for the next generations crime but also their employment status and family life the advantages of higher education observed here are also consistent with and extend the work of ford and schroeder who found any college attendance to be associated with desistance from crime among those with higher levels of delinquency in adolescence our results are somewhat different however in that the middle educational category was not associated with reduced crime indeed our results emphasize the importance of completing college and distinguishing fouryear from twoyear college completion for example the crimereducing benefits of upward pathways were only exhibited by fouryear college completers whose parents had some experience with higher education themselves whether to actually call these firstgeneration students is a matter of debate with some researchers using a stricter definition that only considers those whose parents have no postsecondary experiences beyond high school using a stricter definition being a firstgeneration college completer was not associated with reductions in crime moreover among potential firstgeneration students who did not attain a fouryear degree we observed a slight increase in crime net of covariates though we would caution against placing too much emphasis on this result it may reflect the unique challenges faced by firstgeneration students future research should further examine this group to distinguish those completing twoyear degrees from those who started a fouryear degree but were unable to persist to completion in addition future research might distinguish between fouryear college completion and those completing graduate or professional degrees as a study of educational mobility the findings here most strongly relate to those of savolainen et al who found no support for the ir first hypothesis predicting increased offending among the downwardly mobile but that parents educational resources buffered youth against their own lower educational attainments that upward mobility was found to be associated with decreased crime is seemingly in conflict however many differences in study design are apparent for example their study was based on a finnish cohort examined educational attainments in the second generation to age 15 assessed crime only to age 22 and used interaction terms to model educational mobility one might argue that since respondents educations were still in process and crime was limited to the early transition to adulthood that it is not surprising that parental education tended to dominate the results additionally they examined the process separately for males and females which was beyond the scope of the present analysis future research into potential differences in the role of educational pathways by gender however is clearly needed particularly given recent increases in womens college enrollments in light of the increasing value of higher education future research might also consider differences in the influence of educational pathways across birth cohorts this analysis also sought to examine the role of potential mediators of the relationships between educational pathways and crime although a central focus of research on desistance which has emphasized the role of adult transitions we found only slight mediation when family formation and employment statuses were added to the models further analysis of the relative roles of family versus employment related transitions revealed that familyrelated transitions were primarily responsible for this partial mediation the importance of familial transitions is consistent with the growing stratification of marriage and divorce by education levels more proximal measures of welfare receipt and economic problems were stronger mediators of the remaining associations between downward educational pathways and crime particularly for those whose parents were college educated reductions in economic troubles also partly mediated reductions in crime exhibited by firstgeneration college completers these findings are consistent with recent applications of strain theory emphasizing the role of economic troubles lastly social psychological measures of selfefficacy and depression were found to be significantly associated with changes in crime but to only slightly mediate the experiences of those exhibiting negative pathways as well as differences between those who were stably college educated and the stable middle education group the analysis also took seriously the potential of selection effects or unobserved heterogeneity associated with educational pathways and crime of particular concern might be the small percentage of respondents traversing the high to low educational pathway though controlling for past delinquency gpa vocabulary test scores and educational selfcontrol did attenuate associations between educational pathways and crime most remained robust and retained statistical significance yet we recognize that the possibility of unobserved heterogeneity remains and thus do not make strong causal claims limitations several additional study limitations should be noted add health is a schoolbased sample so some of the most disadvantaged individuals who had already dropped out of the school system were not included in the analyses thus we are likely missing some of the most dramatic instances of educational failure also an important distinction within studies of social mobility is between intragenerational and intergenerational mobility we were motivated to focus on intergenerational mobility due to the increasing rates of college attendance and the growth of firstgeneration students thus we did not examine intra or withingenerational educational pathways such as nontraditional students who go back to school following a lengthy hiatus future research should examine this group another group to consider are those who do poorly in high school or who have low college aspirations or expectations but nevertheless continue on for a college degree given the increased stratification among higher educational institutions it is becoming increasingly difficult to treat completion of college as an allencompassing indicator without considering the quality or prestige of the educational institutions unfortunately measures of prestige reputation or other indicators of postsecondary educational quality are not available within add health we should also recognize that we did not consider other dimensions of intergenerational socioeconomic change such as changes in occupational status or income this is due in part to add health data constraints but also to our main interest in educational pathways though adolescents were asked about the occupations of their parents the resulting categories are too crude to match up with the more finegrained occupational categories of respondents in adulthood use of respondents current occupations would also raise issues of temporal ordering with crime conclusion with these limitations in mind the present study has shown that educational intergenerational pathways are associated with change in crime between adolescence and early adulthood within a large contemporary and nationally representative us sample this issue is critical due to the increasing importance of education both for socioeconomic outcomes as well as family life physical and psychological wellbeing and criminal behavior it is also important given concerns regarding rising educational stratification and inequality in the us society as among the first studies of the role of educational pathways it is hoped that these findings will contribute to future research on this topic mobility and the association between socioeconomic status and crime recent research examines the effects of economic problems on crime and the consequences of criminal justice involvement on intergenerational mobility average crime by educational pathways note n 14742 ses socioeconomic status table 4 crime regressed on educational pathways swisher and dennison page 24 crime

objectivesthis article examines the relationship between intergenerational educational pathways and change in crime moreover it examines the potential mediating roles of family and employment transitions economic stressors and social psychological factors methoddata from the national longitudinal study of adolescent to adult health n 14742 and negative binomial models are used to assess associations between educational pathways ie upward downward and stable and change in crime between adolescence and early adulthood selection effects are assessed with lagged dependent variables and controls for selfcontrol grades and the add health picture vocabulary test resultsintergenerational educational pathways are significantly associated with changes in crime downward educational pathways were predictive of increases in crime whereas upward pathways were associated with decreases in crime these associations were partly mediated by family transitions and more strongly by economic stressors these results were robust to controls for selection related variables conclusionsthis study is among the first to examine the relationship between intergenerational educational pathways and crime in the united states both upward and downward changes in educational attainments were found to be significant for crime these findings are notable given the continuing expansion of higher education as well as concerns regarding increasing stratification and downward mobility in the united states

introduction in recent decades the career progression of women academics especially the factors hindering it has drawn the attention of researchers the gender gap between women and men in academics can be traced back to doctoral study this study aimed to discuss the performance of chinese women in academics shaped by gender norms with regard to academic geographical mobility throughout their doctoral education in retrospect through the interpretation of their experiences this study explored how the performance of women academics is related to their experiences of academic geographical mobility before their academic career begins in this section i examine the challenges that chinese women academics and women doctoral students face what academic geographical mobility might mean to individuals academic career development and how mobility can advance their academic careers in the context of contemporary chinese higher education the chinese higher education context is marked by gender norms which have challenged womens career advancement in academia chinese women are likely to show less ambition because of the different expectations of men and women in society quantitative research shows that compared to chinese men academics womens research productivity is lower for two main reasons chinese women academics are less likely to have sufficient academic networking to gain research resources and collaboration and chinese women academics devote less time to research work mainly because of the imbalance of domestic housework allocation to some extent stereotypes and social expectations hinder the prospective academic development of chinese female doctoral students sun and zhang identified that chinese female doctoral students face nonacademic gender pressure to balance work study and family chinese female doctoral students also report being less confident about future employment on average they take longer to obtain their first work opportunity after graduation a disproportionately large number of women doctoral students choose domestic postdoctoral opportunities or job opportunities in familiar cities which shows that women academics tend to choose less challenging but more stable work opportunities researchers agree that academic geographical mobility is helpful for academic advancement chinese universities aim to attract more academic returnees those who study abroad for doctorates or have periodic overseas doctoral study and research experiences and then start their academic careers in a chinese academy the presumption is that returnees will have higher research productivity to help universities improve their academic development some chinese universities claim overseas study experiences are preferred and provide higher salaries research funding residence and academic ranks to attract returnees in pus interviews with 20 university presidents increased research capacity english language proficiency and creativity were shown to be the advantages of returnees based on these advantageous policies and the developmental needs of chinese higher education overseas research experiences are more likely to help advance academic careers in chinese universities being an academic returnee for chinese women could contribute to their research capacity and make them more competitive in academia further chinese women and doctoral students may be more welcome in the academic job market if they have overseas research experiences this study aimed to investigate two research questions how do gender norms operate in doctoral studies in terms of geographical mobility how do women academics connect their geographical mobility throughout their doctoral studies to their academic careers in the next section a review of the literature on gendered academic geographical mobility and chinese traditional culture is presented gendered academic geographical mobility academic geographical mobility described as a gendered terrain in which more men than women academics participate has been perceived worldwide as critical to academic excellence and career advancement though overseas research experiences are more likely to help women academics achieve prestige and recognition and is one of the key factors associated with academic career advancement academic geographical mobility comes at a cost at the personal and family level despite the potential advantages of becoming academic returnees prior research demonstrated gender segregation in academic geographical mobility leung argued that women are more likely to sacrifice their careers by leaving the profession or giving up opportunities when they are mobilizing for higher levels since it often causes tension with their partners for example women academics in the usa and south korea reported needing to sacrifice their mobility and research productivity for their families women academics face personal and family difficulties associated with academic mobility which makes the compatibility of these intersecting roles difficult some women as insiders tend not to attribute the reasons to gender constraints although outsiders may see this as a gender issue therefore gender constraints like religion and rituals may sometimes work with a disguise for example muslim women academics interviewed by shah attributed the barrier to their academic geographical mobility to religious reasons rather than gender equality issues in chinese universities the participation of women academics in geographical mobility is restricted by traditional culture in traditional chinese culture women are expected to behave as a 贤 内 助 after they start families their husbands are usually considered the breadwinners with the responsibility and obligation to support their families and women are encouraged to put them at the center of the family according to chinese cultural norms a wifes principal duty is to ensure her husbands professional success meanwhile 从 夫 居 is encouraged which means chinese women stay with their husbands families after marriage therefore many chinese women move to their husbands family homes to start a new life similarly in contemporary academia researchers found that the geographical mobility of women academics features tied movers and linked lives suggesting that women academics are likely to move with their male partners when they face geographical mobility the focus of the present study is chinese women academics perception of academic geographical mobility when they were receiving doctoral education based on contested discourses of the chinese traditional culture and the advantages academic geographical mobility may have for their career advancement prior research mainly focused on academic geographical mobility of international women academics while there is limited domestic research connecting the lower productivity of women academics and their lack of overseas experience women academics perceptions and contextualized reasons are usually understudied this study aimed to explore academic geographical mobility in the chinese higher education context and chinese womens perceptions of academic performances in terms of their geographical mobility throughout the doctoral study i conducted semistructured interviews with seven chinese women academics to address this issue driven by the butlerian theoretical concept of a stylized repetition of acts the theory and the methods are introduced as follows theoretical framework a stylized repetition of acts for butler gender is performed by tacit collective performance gender norms are more likely to be implicit and contextualized in their operation it may not be identified in social practice but the result of the operation can be seen clearly and dramatically in the effects butler called gendered appearances naturalized knowledge even though it is based on a series of cultural inferences some of which are highly erroneous the social practice of stylized gender features constructspecific gender norms embedded in an individuals behavior butler explains the following a norm is not the same as a rule and it is not the same as a law a norm operates within social practices as the implicit standard of normalization although a norm may be analytically separable from the practices in which it is embedded it may also prove to be recalcitrant to any effort to decontextualize its operation in this operation of gender norms butler doubts the preexistence of gender subjects she argued that in a particular form of subjection to regulation the gendered subject is produced how do gender norms work in social practice butler argued that gender performances in nontheatrical contexts are governed by more clearly punitive and regulatory social conventions when gender is produced and reproduced by subjects in culture subjects must be subject to regulatory power to become subjects in the resistance and violation of gender norms regulatory power works to identify those actions as inappropriate and problematic through this constant correction and adjustment of gender norms subjects are regulated to form a homogenous performance which is the stylization of the body this stylization is normalized as the regular and normative way of performing this study investigated and interpreted the narratives of the participants when they were women doctoral students using the butlerian theoretical concept of a stylized repetition of acts through the operation of norms prior research showed that women academics including those in china are less likely to participate in academic geographical mobility for the chinese women academics in this study the gender norms of academic geographical mobility are operated in social and institutional discourses butler wrote that gender is an identity tenuously constituted in time instituted in an exterior space through a stylized repetition of acts in this study the main theoretical argument is that under the operation of gender norms in the chinese context women academics participation in academic geographical mobility throughout the doctoral study is regarded as a stylized repetition of acts this theoretical concept is helpful for this study because it may address the social and institutional factors that shaped the performances of chinese women academics in relation to their academic geographical mobility during doctoral study when they made decisions about mobility throughout the doctoral study they were regulated by gender norms to avoid inappropriate and problematic actions to become subjects their repetition of these stylized acts may construct certain performances of women doctoral students although their future academic careers might be disadvantaged by this repetition for butler performativity is not a singular act but a repetition and a ritual which achieves its effects through its naturalization in the context of a body understood in part as a culturally sustained temporal duration by constituting continuous repetition women academics coherent performances are naturalized hence they produce a stylized repetition of acts which makes academic geographical mobility gendered fpsyg data collection and analysis the data for this study were extracted from a research program on the academic career growth of 20 chinese women which was approved by the auckland human participants ethics committee half of them received domestic doctorates while the others obtained doctorates overseas all the participants who gained doctorates before the interviews were working in elite chinese universities at the time of the interviews these 20 participants were recruited through an online advertisement all of them took part in this research voluntarily by responding to the advertisement the relevant information in the formal consent form adequately informed the participants the anonymity of participants was guaranteed before during and after the interviews i stopped recruiting participants once the interview data were saturated suggesting that a few new reports were found in the narratives semistructured interviews were conducted mostly in mandarin chinese and then translated into english without the meaning intact both chinese and english transcriptions were then sent to the participants for any possible corrections and further clarifications before use because of the pandemic all the interviews were undertaken through online video or audio meetings they took 45180 min the duration varied because the interviews were conducted based on feminist storytelling to give the participants ample space to be more powerful while reorganizing their life stories hence i did not set a time limit during the restoration of their life stories the participants were asked openended questions such as why did you choose to do your doctorate overseasdomestically and can you please tell me about the difficulty of your doctoral study all the participants were encouraged to recall their experiences throughout doctoral education and draw connections with their current academic careers and personal lives during the interviews participants narratives were reconstructed reproduced and always undergoing revision as a means of the performative act when the participants recalled their experiences they were in the reflexive process of reconstructing and reproducing their performative acts all 20 participants were asked about geographical mobility throughout their doctoral education i selected seven participants who provided adequate data on the experiences constructed by gender norms according to their narratives after the interviews the participants were allowed to read and edit their transcripts to doublecheck for accuracy all the participants consented to the transcripts in this study i analyzed the interview data in the following three steps first i divided the transcription into different themes such as immobility before the doctoral study these themes were shared and checked in a writing group meeting organized by the faculty of education and social work at the university of auckland second i revisited the data and chose the quotes for analysis driven by the butlerian theory of a stylized repetition of acts third i contextualized these data in the context of chinese society and higher education for further analysis findings geographical mobility throughout doctoral education the research findings are presented chronologically throughout doctoral education to show how the participants perceived their academic geographical mobility at the intersection of contested discourses i considered all the factors immobility before doctoral education a few participants in this study reported that they had struggled with overseas and international doctoral study opportunities when they were seeking them naya who received a domestic doctorate considered overseas doctoral education in the hope of better development in her future academic career however her decisionmaking was influenced by her male partner she said the following i needed to consider the length in the second year of my masters study my supervisor asked me if i wanted to continue my doctoral study under his supervision i thought since ive got the easy mode why take the hard one if i went to the us it might have taken me five or more years to graduate but i finished my doctoral study here in 3 years and my boyfriend and i cant keep longdistance for years therefore i considered all the factors in this situation pursuing a doctorate away from her boyfriend might have sabotaged nayas relationship despite her desire to study abroad she was willing to fulfill the social expectations of women during her doctoral study after all in chinese social discourse women doctoral students are at the best ages for marriage and childbirth even though the international mobility of doctoral students improves the quality of doctoral training and enhances the academic development of earlycareer researchers when the personal pursuit of academic development threatened to shake the relationship with her significant other naya chose to secure her relationship to meet the implicit standard of normalization of being a woman similarly zhong dreamed of studying abroad for her doctorate especially after being a 1year visiting scholar in the us however she eventually chose to continue with her doctoral study at the university she was working at because if i had her agency to make a difference in academic work was strong however after careful consideration she still prioritized family responsibilities under the regulation of gender norms to avoid the consequences of challenging social conventions naya and zhong did not change their plans to seek doctorates however the all the factors naya considered and zhongs choice between doctoral education and caring responsibilities indicated the decision of how and where to do a doctorate was not entirely up to them naya concluded that her choice was the most efficient one while zhong thought it was the rational choice however they were both aware that doing doctorates overseas may have contributed more to their academic careers they were both working on worklife balance before they entered academia to dodge the social consequences of going against gender norms in other words both naya and zhong compromised their career aspirations to perform their gender roles with overseas research experiences women academics are more likely to earn prestige and recognition in academia partially overcoming the social disadvantage of gender which demands that women academics make adjustments required by cultural and gender norms therefore naya and zhong presented the stylization of the body to form a homogenous performance in relation to their academic geographical immobility they knew that shaped by the contested norms selfsacrifice for them was inevitable in their academic career development naya and zhong both admitted that their paths may have been different if they had done doctorates abroad they also sought other ways to compensate for the overseas doctoral education they did not receive during nayas doctoral study she spent 1 year studying in the us as a visiting doctoral student after doctoral graduation zhong reached out to a doctoral supervisor working in a leading university and learned from this supervisor about english academic writing for more than 5 years in chinese culture because of the culture of 从 夫 居 social discourse encourages women to stay or move with their husbands therefore chinese women are less likely to be mobile as individuals even if it benefits their careers however because social discourse emphasizes mens career success relationship maintenance and family responsibilities are less likely to interfere with their mobility the interview data in the next sections also support this to be honest i am very traditional transnational mobility for doctoral education in bais case what hindered nayas path to overseas doctoral study was her catalyst she described her male partners company and encouragement another important reason was that my husband her boyfriend at the time had been planning to study abroad for years he influenced me the first time he said we should apply for overseas doctorates together i thought it was incredible i had never thought about this option to be honest i am very traditional though i was going to pursue a phd if the big issue marriage before the start of her doctoral study bais concerns were regarding her possible failure to fulfill the social expectation of women which is to be married or have a serious longterm relationship at the marriageable age bai was scared about her potential violation of social discourse because she is very traditional for women starting a family is an indispensable and highly timesensitive step in every individuals life trajectory bais worry about how others saw her reflected the power of gender norms bai added many of my old friends didnt pursue doctorates and they got married and had kids when i was doing my doctorate thus she felt she needed to fulfill gender expectations to perform a tacit collective agreement by following her friends life trajectories the overseas doctoral education she took was built on this presumption of proper repetition of gender performances rui who acquired her doctorate overseas echoed bai i want to thank my husband for coming to this country with me i would not have chosen to study overseas if he had not been supportive gendered strategy in transnational mobility is often linked with family and parenthood with her husband and daughters company rui completed her doctoral study and continued with a postdoctoral research fellowship at the same university these overseas experiences largely advanced her academic career after she returned to china these two women academics decisions to study abroad for doctorates were shaped by their goal of selfrealization being academic returnees they both claimed that the experience of doing overseas doctorates was very helpful and beneficial to their future career development it shows that women are capable of achieving academic excellence if they have the opportunity to exercise geographical mobility tied movers may typically allude to passive followers typically women whose partners relocate for career progress however in both of these scenarios being tied to movers also affords women the chance to further their education however this means of mobility reduces womens autonomy by maintaining their affiliated social status if their career advancement hinders the mobility of their male partners women may sacrifice their careers girls didnt make the choice choices of mobility after graduation interviewer you said many of your male colleagues took the overseas postdoc is it because of their research capacity being better than that of their female counterparts or were those just their choices an actually everyone can have this opportunity but girls didnt make a choice an was considering her intimate relationship in the transition between a doctoral study and academic career which was similar to the performances of naya and bai before their doctoral study according to ans narrative in the top domestic university she studied at women doctoral graduates were less likely than men to choose overseas postdoctoral positions and they regarded men taking these positions as the norm even when they were academically capable of receiving equivalent overseas postdoctoral appointments an and her female peers were repeating their senior women doctoral colleagues pursuit of domestic postdoctoral positions or domestic academic working positions in this case the gender norms were maintained and enhanced by the homogeneous performance of women doctoral students at ans university postdoctoral appointments contribute to early career development the choices after doctoral graduation usually between taking domestic postdoctoral appointments and accepting academic positions are more likely to constrain women doctoral graduates research capacity development than their male counterparts who take overseas postdoctoral appointments identifying with gender norms an and her female peers categorized themselves differently from men they leaned toward different decisions even though they were aware it might hinder their career development if they made a sacrifice these women doctoral students showed their conformity and loyalty to gender norms by making sacrifices or compromises for their future careers through their repeated performative acts shaped by gender norms the women doctoral students tended to or had to choose conservative career development paths which may have started to widen the gender gap before their academic careers after all did the participants know what their decisions might lead to an provided her explanation sometimes we me and my female doctoral colleagues realized it dropping the opportunities for overseas postdocs was a sacrifice but this thought made us unhappy we cannot think of it in this way yet every step every choice determines future career development these are all turning points academic geographical mobility is closely tied to gender inequality an and her women doctoral colleagues understood the possible consequences of their decisions nevertheless they embarked on this path her expression we cannot think of it shows a loyalty to some bond in the present or the past which is simultaneously preservation as well an and her peers put on the mask to conceal this loss of advanced academic careers however in this way this loss is maintained through its concealment they performed this stylized repetition of gender norms by making potentially inferior decisions the domination of social discourse after graduation emphasizes the performances of gender norms by women doctoral students looking back at her decision about overseas postdoctoral positions an explained if i were a man if i didnt have a partner who cared about me i might have made a different choice ans narrative showed the different gender norms of women and men in career development her stylized repetition of actions reflected her concerns about social consequences dannis story of her doctoral colleagues resonated with ans narrative when some of my female doctoral colleagues were looking for academic positions they accommodated themselves to the working locations of their husbands therefore they went to some platforms in lower level universities compared to their academic capacity it makes their future academic career development harder i am not very optimistic about them danni gave the examples of her doctoral peers to show the relationship of their choices to future academic career development she believed that if these female doctoral students started their academic careers in higherranked universities their academic performances would be better she also described the regret of her doctoral supervisor she one of dannis female doctoral colleagues was very smart in doctoral study how can she stop doing research after having two children this had an adverse effect on the future career development of some female doctoral students something that was also noticed by lunas doctoral supervisor luna claimed in recent years men doctoral supervisors in my department have accepted fewer women doctoral students because some of our women doctoral graduates did not continue their academic careers after becoming academics they concentrated on their families it made male doctoral supervisors feel that their effort to train these female doctoral students was wasted therefore in my phd study our departments proportion of new male doctoral students was increasingly larger gender norms guide female doctoral students in different directions which may reduce their agency to be ambitious and accomplished in their academic careers more importantly this tendency is reinforced by supervisors the representatives of authority with power over doctoral students when women doctoral students disadvantaged mobility became a ritual and a culturally sustained temporal duration in an and dannis narratives doctoral supervisors reacted negatively to the attrition of women doctoral students in their future academic careers as en said in academia the discrimination against women is implicit and unidentifiable and when the policymakers are making decisions you cant tell if it relates to gender in lunas narrative her supervisor found that female doctoral students were more likely to underperform than their male counterparts after graduation therefore her male supervisor explicitly truncated the opportunities for women to receive doctoral education by limiting enrollment for luna this gender discrimination against women doctoral students was explicit and identifiable however as en said this exclusion was hard for women applicants to identify because they may have attributed their failure to other reasons such as unsatisfactory performances in the interviews discussion past mobility and future academic career in retrospect the participants reported how gender norms shaped their performances in academic geographical mobility throughout their doctoral education here i discuss the findings from two aspects of academic geographical mobility what it means to be a woman and the connection with their academic career development mobility for being women from the narratives when these women academics recalled their experiences of academic geographical mobility throughout doctoral education they considered gender norms for the maledominated culture they were in they reported two ways of mobility moving with their husbands and staying with their families for one some of the women academics chose to move with their male partners when deciding about academic geographical mobility throughout their doctoral education this mobility was usually based on the great benefits of the husbands career development consequently limiting womens academic choices for example bai completed her doctoral study in belgium because her male partner got a phd admission in a nearby european country butler claimed that agencies perform functions under regulation when bai went abroad with her male partner for doctoral study her agency operated within the framework of gender norms encouraged by chinese culture she conformed to the gender norm of having a potential marriage at an early age by moving with her fiancé her agency of seeking a doctorate operates under the regulation of being recognized as a woman for another woman if the women academics suppressed their desire to seek overseas doctorates or research experiences it was due to their desire to stay for their families some participants truncated their agency by giving up the opportunities of receiving overseas doctoral education or taking postdoctoral positions which limited their academic geographical mobility and thus might have prevented them from having a stronger start in their academic careers moreover according to the narratives by an and en women tended to have fewer opportunities to gain positions in doctoral study and academia their experiences of the interaction between the agency of academic development and gender norms constructed the tension in those womens academic careers and then shaped their performance in their academic careers notably even if some participants gave up or were excluded from some academic opportunities none of them showed explicit resistance they thought they were making rational choices when they reported these experiences as repeated performative acts in the interviews therefore i argue that shaped by gender norms geographical academic mobility for these chinese female doctoral students is instituted in an exterior space through a stylized repetition of acts mobility in the condition of gender norms maintenance this stylized mobility described as naturalized knowledge which may pose problems for their autonomy and career progression is supported by chinese social discourse which expects women to prioritize their families connection with their academic career development in the operation of power relations to maintain gender norms the participants were subject to those norms by forming stylized repetitions of acts throughout their doctoral education this agreement makes women recognizable and understandable and contests their singularity moreover it is likely to disadvantage women in academia on this basis in the interviews naya asked where are the female doctoral students after graduation danni proposed a similar inquiry in detail where are the female colleagues now when i was doing my masters degree and phd there were a lot of female students it is not a maledominated discipline where are they when i was at an academic conference of fifty people the proportion of women in academia was generally between onefourth and onethird however in my doctoral study the proportion of female students was higher than half naya and danni were concerned about the disproportionate participation and presentation of women academics at academic events and in academia in dannis observation this shift from femaledominated classrooms to maledominated workplaces may be caused by the disadvantages they experienced in their academic careers based on the findings the lack of advantageous academic geographical mobility throughout doctoral education may reduce the competitiveness of women in academia and their repeated performances are likely to reproduce gender norms on the one hand as butler writes construction is not opposed to agency it is the necessary scene of agency the very terms in which agency is articulated and becomes culturally intelligible this lack of academic geographical mobility throughout the doctoral study shaped to some extent the career development of these women academics meanwhile the need for cultural acceptability limited their freedom of choice for example the fact that she and her female doctoral colleagues did not apply for overseas postdoctoral opportunities did not stop their pursuit of academic advancement nevertheless their decisions to give up potential career advantages made them conform to gendered societal norms which is more likely to encourage mens career ambitions on the other hand throughout doctoral education women doctoral students were confronted with the expectation of normative womens performance which is already being shaped by gender norms for butler i become recognizable through the operation of norms the participants were subject to the regulation of gender norms to make them recognizable their academic careers were also reformed for this gendered social expectation along with the performances of gender norms right through to doctoral graduation for example naya bai and an would prefer to start a family before a certain age even though their academic career aspirations might contest this goal this stylized repetition of acts based on a series of cultural inferences forms female doctoral students decisions regarding academic geographical mobility it is likely that as mentioned future career development is determined or limited which may answer dannis question where are the women academics now conclusion in this study i have explained the participants performances of gender norms throughout their doctoral education by qualitatively examining how academic geographical mobility is shaped by gender norms throughout their doctoral study and how the stylized repetition of acts is formed to affect their current academic performances when women academics made decisions before and after doctoral study they were more likely to prioritize fulfilling social expectations to become normative women their stylized choices and decisions conformed to societal gender norms but interfered with the career trajectories of these women academics before they entered academia however notably these norms of mobility are not as fixed as we generally assume them to be if women doctoral students repeatedly perform with the agency of academic excellence in making decisions about geographical mobility which may lead to the subversion of gender norms and gradually change the social and institutional discourses although this study merely focused on a small number of participants the analysis based on semistructured interviews has provided knowledge of how gender norms shape womens academic geographical mobility throughout doctoral education by connecting doctoral study and academic careers and may explain some women academics disadvantages in career development this study shows that gender issues in doctoral studies may regulate women doctoral students choices and thus affect their future academic careers therefore the findings require universities supervisors and educational administrators of graduate students especially chinese female doctoral students to provide study guidance and career suggestions based on their research capacity instead of their gender this study also aimed to raise women doctoral students awareness of gender norms when deciding their future careers the limitations of this study reflect two aspects for one the disciplines of the participants are mainly social sciences geographical mobility for academics in scientific research may affect their career progression differently for another geographical mobility does influence academic careers to some extent however there are more complex reasons for career progression further studies may consider taking women academics in stem fields as participants intersected factors that affect geographical mobility and academic career advancement deserve further indepth study gender studies may conduct interviews between groups of men and women academics for comparison data availability statement the raw data supporting the conclusions of this article will be made available by the authors without undue reservation ethics statement the studies involving human participants were reviewed and approved by granting body university of auckland human participants ethics committee reference protocol number 024731 title of study chinese women academics career development the patientsparticipants provided their written informed consent to participate in this study funding the research leading to these results has received funding from the ministry of education of humanities and social science project and the project of social science foundation of jiangsu province publishers note all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations or those of the publisher the editors and the reviewers any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher

connecting the past and the future academic geographical im mobility of chinese women academics throughout doctoral education

introduction human connection is at the heart of sexuality education and the implementation and adaptation of the school curriculum over time inevitably involves a range of people sharing their perspectives and working together in order to shape the subject on paper and in practice sexuality education is named as one of seven key areas of learning within the health and physical education learning area in the new zealand curriculum as well as in the curriculum document which preceded the nzc health and physical education in the new 1 3 zealand curriculum learning is mandated from year 1 to year 10 of the nzc in all learning areas which means learning experiences in sexuality education should exist from the beginning of a childs schooling journey in 2002 the ministry of education published guidance for school leaders teachers and school boards to support the effective implementation of sexuality education a 2013 report of the health select committee into improving child health outcomes unequivocally made a case for strengthening sexuality education in schools and monitoring of schools programmes by the education review office this report was followed in 2015 by the ministry of educations update to the 2002 guidelines as well as a national evaluation into sexuality education in schools by ero which found significant gaps in sexuality education in some schools amidst a backdrop of cultural and social changes including the proliferation of social media and young peoples use of digital devices changing family structures and changing social and gender norms the 2015 sexuality education guide was redeveloped and published in 2020 as relationships and sexuality education a guide for teachers leaders and boards of trustees two significant aspects of this redevelopment are the renaming of the area of learning as relationships and sexuality education and the separation of the guide into two documents one for years 18 and one for years 913 both of these movements extend opportunities for primary schools to incorporate rse into learning programmes from year 1 of the curriculum in partnership with their school communities as suggested by the 2018 ero evaluation implementation of rse is inconsistent across primary schools in the country boyd and hipkins state unlike other learning areas hpe has goals and ways of working that overlap with the wider mission and ways of working of schools this is evidenced in rse through the involvement of the health sector and interest groups in resourcing and teaching in health education classrooms it is well documented that a number of externallyprovided programmes and facilitators are entrenched in hpe in aotearoa1 schools particularly at the primary school levels however it is unclear as to the extent of this occurring in rse specifically and how external providers partner with schools to support rse health education is the only subject in the curriculum for which schools must consult their community as outlined in the education and training act 2020 this consultation must take place every two years and involves consultation on how health education as a subject is to be delivered in a school while anecdotal evidence suggests that the majority of school community members support schools plans for health education research evidence is needed as to teachers and school leaders 1 3 new zealand journal of educational studies 57367384 understanding of the consultation requirements and means by which they consult with their communities the purpose of this paper is to explore partnerships in primary school rse in aotearoa presenting findings from a qualitative study using case studies of three primary schools we negotiate territory relating to who should be involved and have a say in rse how discussions between people might be facilitated and partnerships formed and what possibilities might exist for thinking differently about how we work with people in rse we do this with the hope of igniting thought about how we can work as a village to plan for and enact rse that meets the needs of learners in primary schools in aotearoa literature pertinent literature relating to partnerships between members of the village involved in rse in primary schools in aotearoa traverses the following areas homeschool partnerships the role of external providers and support services in rse and community consultation in relation to health education in the education andtraining act 2020 we limited our search for literature to australian and aotearoa publications given the similar curriculum context for rse in the two countries rse in primary schools is an underexplored area in aotearoa research which led us to look more broadly towards ministry of education policy documents homeschool partnerships literature and eros evaluative work which is relevant across learning areas in the nzc newly developed national education and learning priorities in aotearoa include objective one learners with their whānau are at the centre of education priority area two for this objective requires schools to partner with whānau and communities to provide responsive education providing a framework for this in the context of rse the rse guide refers to a wholeschool approach which draws upon the health promoting schools model to delineate three areas of school life ethos and environment curriculum teaching and learning and community connections it is the latter dimension of school life that considers the importance of connections and partnerships with whānau education and health agencies and community groups the existence of productive and positive partnerships between schools and whānau make a positive difference to the engagement and achievement of learners participation by whānau in areas of school life has over time involved parents through decisionmaking participation and collaboration in school events and informationsharing around school policies and practices and teaching and learning homeschool partnerships have been found to be more effective when relationships are collaborative and mutually respectful responsive to community needs embedded within the schools culture focused upon learning and based upon timely twoway communication moreover partnerships to support student engagement and achievement also involve wider community members including local kaumatua and iwi through local curriculum design and placebased learning applying homeschool partnerships to rse specifically ero discussed the importance of connections to community including the role of facetoface hui with whānau and communities the need for information to be provided to whānau about rse programmes and opportunities for whānau to be involved in the twoyearly consultation for health education in the australian context walker et al and robinson et al stress the importance of collaboration between schools and parentsfamilies in order to plan for and teach a responsive rse in primary schools the australian research asserts the need to partner with parents to assuage any fears over clashes in values between the school and the parent community and to ascertain parental wishes for rse the role of external providers and support services in health education and rse is a perennial issue in the literature across aotearoa and australia including issues relating to the role and purpose of outside agencies and how to create partnerships that enhance rse learning for students in primary schools ero asserts the importance of connection to external groups such as health services the police and nongovernmental organisations working in the area of rse in ways that support teachers to plan for and teach rse rather than solely take on the role of the classroom teacher in rse the ministry of education asserts that it is not best practice to hand over responsibility for rse to external providers but instead for schools to use external providers to support teachers with specialist knowledge and expertise in this way teachers are involved in planning for and teaching rse in ways that embed rse across a period of time to illustrate this approach johnson et al researched primary school teachers confidence to teach rse when supported with a 10lesson unit of learning created by an rse external provider using the unit led teachers to work in partnership with their colleagues to modify learning to meet their students needs and ultimately feel more confident teaching rse the authors concluded that establishing partnerships with external providers including providing materials for teaching rse can enhance rse in primary schools in aotearoa this connects to the work of family planning a nongovernmental organisation rather than taking on the teaching of students themselves family planning provide support for teachers to teach rse through their extensive teaching and learning resources professional learning and development workshops with school staff and guidance on strategies for effective teaching learning and assessment in rse the education and training act 2020 requirement to conduct community consultation around the delivery of health education every two years connects to homeschool partnerships in terms of twoway communication and consultation the act offers wider community members and learners the opportunity to provide voice that helps shape the delivery of health education in a school 1 3 new zealand journal of educational studies 57367384 the requirement for community consultation was written into the previous education act 1989 therefore the requirement to formally consult is not new there is a lack of research however about schools mechanisms for and experiences of the health education consultation ero report that schools with effective practice in rse maintained good connections with their community including hui and facetoface consultation which resulted in rse programmes that reflected the values of their communities guidance developed by the ministry of education and tūturu explicates for schools the legal requirements for consultation and offers ideas and resources for consulting both documents refer to the need to consult not only whānau but teachers in the school external providers and other community members andlast but not leastlearners as the review of literature above indicates a range of research and guidance documents exist in the area of homeschool partnerships the role of external providers and support services in rse and community consultation in relation to health education in the education andtraining act 2020 however a gap exists in relation to how all of this plays out in practice in aotearoa primary schools particularly in relation to rse an appreciative socially constructed approach to inquiry our research is underpinned by an appreciative inquiry approach appreciative inquiry is grounded in social constructionism through shared sensemaking as researchers and research participants learn from each other about what is valuable about practices and how this value can be built upon in context of our inquiry we acknowledge that rse practices in primary schools are bound by cultural social political and historical contexts unique to different schools it is through conversations with participants that we as researchers can draw out strengths in rse practice as well as spark conversations about possibilities for building on these strengths appreciative inquiry was developed to reveal often overlooked positive aspects of experience generate theory about what works in practice and plan for a new reality an appreciative inquiry agenda looks beyond what is broken to prioritise the positive and discover and generate stories of success and appreciates peoples strengths rather than focusing on their shortcomings we view this as a more productive approach when working with rse teachers and leaders appreciating the strengths of their practice is more likely to facilitate rich conversations and support them to build upon these strengths moving forward the 4d model from cooperrider and whitney is a common model used to frame methods and data collection questions the 4d model comprises the stages of discovery dream design and destiny positioning our study as exploratory we have focused upon the first two stages in the model discovery and dream by framing our research inquiry towards an appreciative agenda we have the opportunity to hear and tell stories about whats going well in rse practice and how we can learn from this in order to capitalise upon the rich potential of rse learning and whole school approaches that affirm childrens and young peoples identities and support the development of knowledge and skills for healthy relationships and sexual health moreover as researchers we can assess the feasibility of working with the 4d model in its entirety for future research projects methods the wider study from which this paper is drawn was a multiphase mixed methods inquiry which for phase one involved a nationwide survey of primary principals and teachers in this paper we focus on findings from phase two of our study collective case study in three primary schools the purpose of using collective case study design was to inquire indepth and with an appreciative lens rse practice in schools with primaryaged learners as a collective case study we are able to analyse data across social settings that share commonalities below we provide details of participants data collection methods approach to data analysis and methodological issues ethical approval for the research was gained from the university of canterburys human research ethics committee data collection data collection for our case study phase of the research consisted of indepth semistructured interviewing and a workshop approach that involved participants working with extracts from the rse guide and preprepared prompts to provoke dialogue between participants the selected extracts from the 1 3 new zealand journal of educational studies 57367384 rse guide were a wholeschool approach to rse key learning charts across curriculum levels 14 and rse for diverse ākonga 3 the three hui were between 90 min and 2 h long the hui were audio recorded with written transcripts created for analysis supporting the interview transcripts were notes from participants involvement in the workshop activities data analysis reflexive thematic analysis was approached both inductively and deductively for our case study data inductive analysis enabled us to code the data in a way that was open to the possibilities presented in the transcripts deductive analysis enabled us to code the data in relation to our appreciative inquiry theoretical framework as well as our preexisting understanding of rse which included common challenges tensions and possibilities documented in rse literature with which we were familiar our thematic analysis for the case studies data was undertaken both individually and collectively we worked together to familiarise ourselves with the data before independently coding and generating initial themes we then came back together to revise and refine themes before defining and naming themes working in this way allowed us not to achieve consensus but to add to each persons analytical thoughts to create a richer analysis overall analysis of findings it takes a village introduction in our analysis of data we found a range of connections and conversations between a wide variety of people and organisations that had a critical role to play in relation to rse both inside and outside the classroom planning and teaching rse involved schools and teachers working in partnership with colleagues within and across schools connections with whānau and relationships with learners access to wider supports and services in combination these partnerships although presenting challenges at times offered our participants the guidance and reassurance that they needed to plan and teach rse that was responsive to learners needs collaboration with colleagues within and across schools participants in our case study schools recognised the importance of collegiality and having opportunities to learn from and with more experienced colleagues this was particularly the case for teachers of younger learners who in the past had not taught rse at the lower levels of the curriculum as hannah from school 2 exemplifies ive always taught juniors mostly… its been oh its puberty its the older part of the school… so i do feel a wee bit out of my depth a wee bit because i havent… strategies to support each other as teaching staff were discussed for example time to sit together and discuss and to look really closely at the lessons and have those important conversations with each other raise any concerns collegiality was also discussed in relation to teachers differing comfort levels with rse i think weve been mindful of peoples religious beliefs we have said if you feel uncomfortable or if you need somebody to support you… we ask them what they need we dont just demand that they teach something that theyre uncomfortable with… so we do seek ways to find solutions to any uncomfortableness for anybody here alison recognises that teachers bring different levels of experience and comfort to their role as a teacher of rse and that a supportive school environment is needed to enable teachers to provide quality rse this connects to the constructivist principle of appreciative inquiry in that teachers can work in dialogue with colleagues in order to develop confidence and strengthen practice the issue of support from senior leadership and governance also came to the fore different experiences were discussed across the schools when undertaking the workshopping component of the hui the perception existed that senior leadership did not prioritise rse or health education it hasnt always been the top priority for our school management i guess in school 3 however connections between governance policies and teacher practices were articulated so your board they know everything thats gone through your policies and procedures and thats spoken about at every board meeting… staff know about neglect or abusethey know about those policieswe go over those support from school leadership for rse and health education is widely discussed in the literature as a key factor influencing teaching and learning commentary from our participants resonates with this indicating that teacher practice in rse is constrained or enabled by the value and priority afforded to the subject by leaders in a school 3 new zealand journal of educational studies 57367384 connections across schools were also mentioned in the case study schools as being valuable when planning for learning in rse for school 2 this came about through connecting with other special character schools in the local area including the secondary school brainstormed everything… transition into their school because theyre our main feeder school in for the catholic system here christine discusses how the secondary school health education teacher enabled the feeder schools an opportunity to get together share knowledge and discuss issues pertinent to catholic schools in the local area kāhui ako provide a governmentfunded mechanism whereby groups of schools work together to help students reach their full potential across their learning pathway from early childhood to secondary school education two of the three schools participating in our research were part of kāhui ako however the potential of these partnerships for connecting schools in curriculum areas such as health education could be further developed as rebecca from school 1 noted theres so many different things that people are doing and they dont ever really get shared with everyone going in that same direction… nobody else knows about it and it just doesnt become this whole school approach this comment points to the fact that teachers are perennially juggling many tasks and wholeschool and wider school initiatives can become lost amid everything else that needs to be done nevertheless the kāhui ako model presents a valuable opportunity for schools in similar geographical locations or with shared special characters to work in partnership in areas such as rse to enable robust learning pathways and to share knowledge and expertise including around connecting to whānau in the community connections with whānau regular and transparent communication with whānau around matters to do with rse were discussed extensively across the interviews with the case study schools participant commentary traversed the territory from informing parents and whānau to seeking their input on rse learning and the challenges that arose periodically with whānau views and understandings around rse when informing parents about rse in their school participants were often ready to receive negative feedback and withdrawals from class but this more often than not did not transpire sexuality education is the one part of the new zealand curriculum where parents can request for their child to be withdrawn joanne noted that weve had a couple of kids across the 78 s withdrawn but very few participants across the three hui discussed how they frontfooted communications to whānau about upcoming rse learning this helped reassure teachers that whānau supported what was being taught and enhanced the opportunity to initiate conversations at home with their children to reinforce learning at school this is exemplified in the following exchange from the participants from school 3 some of it is what we perceive as going to be an issue for parents and its not they are so pro teaching body parts and everything they just want to know what were teaching weve had no negative feedback have we… we communicate regularly and we kind of give the parents a heads up about whats sort of coming next and theres definitely been conversations happening at home with children which has been really positiveso prior to the lessons being delivered the importance of open communication with whānau is consistently recognised across rse research and guidance and homeschool partnership literature more broadly while open communication with whānau is vital to responsive rse schools discussed the importance of being inclusive with diverse communities rebecca commented that the school has such diverse kids and therefore the whānau community should represent that as well and their voice is important communication with whānau was seen as valuable for many reasons including to dispel assumptions or misunderstandings about rse they still believe that sexuality education is just about sex so its educating the parents that thats not the case the participants in school 3 discussed seeking input from families of muslim students at the school we have quite a large muslim community at too so we did make sure that there was a place for them to ask questions because we did know that they may be one of the communities that might … they might just have had a few more concerns about the content that we were sharing but they didnt they were very very happy predominantly with what we were doing anyway but they had lots of questions the extracts above speak to the sometimes challenging aspects of seeking input from whānau such as navigating different cultural attitudes and values and dispelling misunderstandings of rse the extract above supports the notion that whānau from diverse cultural backgrounds welcome opportunities to hear and ask questions about the rse programme issues relating specifically to the mandated community consultation were discussed across the case study hui rebecca from school 1 indicated that her school had until recently not been uptodate with the consultation requirements i kind of had to drive this from my position on the board but also my passion and advocacy for health education and so the unfortunate thing is hasnt been done until now… and then i got on the board and then kind of well it happened and i think helped as well advocate for that 1 3 new zealand journal of educational studies 57367384 here issues relating to governance and leadership can either be a barrier or enabler to community consultation according to ero leaders have a crucial role in ensuring effective stewardship in a school rebeccas comment above attested that having a principal and a teacher on board makes a difference in relation to the mandated consultation each school offered information about the ways in which they had recently consulted including complications caused by covid19 restrictions in the current and past year for school 1 facetoface consultation was highly valued we feed off the facetoface communication as well a lot of the time you know seeing the people respond and just having the communication and conversation just evolve naturally i like the idea of an information evening and then a bit of discussion afterwards and finding out what people think once theyve been informed whats actually in the programme rather than assuming they know whats in it school 3s plans for consultation in the current year had been skittled by covid19 restrictions this year we were going to run for all parents across the school which we didnt end up being able to run just because they werent allowed on site participants comments above indicate that they understood the need for community consultation around health education and are cognisant of the need for facetoface ongoing consultation activities with a variety of community members in order to best enact the consultation the teachers were however grappling with the question of how much information they should provide as part of the community consultation as well as how to explain to whānau the purpose of the community consultation the question of how much information is too much information was discussed by christine from school 2 we dont want them to feel like by getting all the information they can pick and choose what they want taught to their children and its not normally about hiding something from parents its about either they can withdraw their children if they want but sometimes if you give everything thats when they start going no we dont want it taught… so that was the sort of way we were debating itwhats going to be helpful to parents and whats actually going to cause anxiety that they didnt need to have in the first place while alison from school 3 discussed how whānau were surprised about being asked for input into the rse programme the parents came and said we were surprised you talked to us about it because you dont talk to us about reading or mathsyou dont consult around how we deliver that programme and yet youre asking us about this 3 according to robinson et al schools need to provide parents with more information about what is taught in rse for example an outline of the curriculum across levels of schooling the mandated community consultation in aotearoa thus provides schools and teachers a useful mechanism for opening conversations with whānau about rse relationships with learners participants in the case study schools discussed the importance of the need for wellestablished relationships with learners before rse was to take place the value of having wellestablished relationships with learners was explored across the hui the way in which classes were structured at school 3 meant that there was ample time for relationships between teacher and learner to develop before the meatier aspects of rse occurred we have the kids for 2 years which is great because youre developing that relationship even more and i think that plays a role in delivering that and the questions that might come up because they do feel theyre in a trusted environment it is really quite interesting but as well good to be able to have that trust to have those conversations with the kids and they trust what you say and its quite good makes for meaty conversations the importance of knowing the learner is documented in local educational research such as te kotahitanga and mana ūkaipō and in health education contexts as liz from school three mentions above building trust between teacher and learner is an important prerequisite for the sometimes sensitive topics covered in a subject such as rse considered as part of the teachers responses to the third workshop prompt was the collection of student voice to inform planning and teaching the three schools participating in our research held different views however on the extent to which student voice was gathered and acted upon within their school for school 1 student voice was the starting point for planning for teaching for us its just default its like well its for them so lets just go to them first the participants from school three discussed the collection of student voice more broadly in the school setting in terms of upholding the mana of māori learners i think we actually do quite a lot here to just to ensure that the children that identify as māori actually have that mana installed in them theyre acknowledged recognised celebrated we gather their voice to illustrate the complexity of seeking and acting upon student voice in the primary school however the participants from school 2 discussed the tensions surrounding collecting student voice to inform planning in rse 1 3 new zealand journal of educational studies 57367384 i would be nervous about collecting student voice too often because if were not prepared to use itand there are many things we cant use… i think its better off to choose what youre asking really carefully or gather it a different way its like if you dont survey them you dont know what they want but if you know your students that youre working with everyday then you shouldnt have to survey them to know their needs and weve been talking about how a lot of our teaching here is responsivenot to the voice talking to us but listening and observing according to ero if schools are not regularly collecting information about what students want to learn… there is a risk that they are not meeting their students needs walker et al also reinforce the importance of flexibility in teacher practice to meet students needs it is therefore important for primary schools to find ways of seeking and integrating student voice that are workable for their contexts access to wider supports and services a final aspect of the village of people involved in rse in primary schools is the array of wider supports and services that are accessed by schools these are used to support leaders and teachers to develop their capability as external providers that supported rse in the classroom and as providers of teaching and learning materials that teachers used for rse for the case study schools supports that they accessed reflected the nature and character of their context as noted by wylie and macdonald access to supports connected to student wellbeing such as social workers and health professionals are only funded for primary schools in communities underserved by social and economic systems in our case study schools only school 1 had access to counselling services onsite we have a school counsellor and next year well have two moving away from student support services towards supports to develop teacher capability the participants from school 2 discussed how the catholic advisors supported them to embed rse in ways appropriate to the special character of their school the catholic worldview sits alongside so everythings taught through the catholic worldview but acknowledges everything in that document… were quite happy for our catholic re advisors who have looked at it to bring in both together at the same time the ongoing support and written guidance offered by the catholic advisors was viewed as being invaluable to reassure the teachers and leaders at the school that their rse practice aligned with the special character of the school in schools 1 and 3 external supports were used to enhance teacher capability to teach rse and to embed a safe and inclusive environment rebecca from school 1 spoke about her relationship with the regional schools coordinator from insideout who work to make aotearoa a safer place for all rainbow young people weve had in this year i just spoke with and got the three new resources that arent actually officially out to the schools yet… im just having a flick through those at the moment and then is going to have a look this comment speaks to the fact that both rebecca and her principal are interested in learning more about uptodate effective practice in making the school safer for rainbow youth this move is endorsed by messages in the rse guide and reinforced by support from the ministry of education for the development of these resources for schools further research however is needed into coverage of rainbow content in rse which todate has been found to be lacking it is important to acknowledge that this is an area of rse that can be open to social political and cultural tensions both in aotearoa and in other parts of the world these tensions may have a role to play in teachers coverage and confidence in this aspect of rse another layer of support that can be accessed by schools are external providers who teach part or all of rse in primary schools across the three schools the participants discussed some use of external providers to support rse teaching but this was not extensive christine from school 2 explained how the public health nurse worked in partnership with the school to teach aspects of rse shell do her role for that small bit of actual puberty or her wee brief that shell do and then we do the rest of it so weve still got one section where the public health nurse will do and the rest of it were going to cover of all the ages and stages christine went on to explain that the school uses external expertise to enhance learning rather than to replace the teacher in rse learning i still think wed possibly get an outside educator in here as well to really enhance it… because were not experts and weve got so much else to do this is a doubleedged sword however as the final part of christines point attests toaspects of rse learning may feel outside teachers areas of expertise and time or opportunity for professional learning and development may not exist thus requiring the need for external support on an ongoing basis the question of who the best teacher is for rse also arose christine from school 2 said that if theyve been with me from year 4 and theyve grown up with their teacherliterally they dont want to talk about it with that person whereas alison from school three held an alternative view whereas now its kind of done with the person that you trustin your classroom environment the polarised views above resonate with research which argues that heterogenous views exist as to whether students are more comfortable being taught rse by their classroom teacher or by an external provider as noted by ero this underlines the importance of capturing student voice in order to ascertain what works for a given group of learners in a given context a final aspect in our case study schools relating to external supports and services connected to the use of teaching and learning resources for rse discussed as part 1 3 new zealand journal of educational studies 57367384 of the second workshop extract family plannings navigating the journey resource was discussed by each school although school two noted that they had to be careful with how they used their resources given potential conflicts between the organisation and the catholic worldview they have some amazing stuff but it doesnt fit with a catholic school for schools 1 and 3 however navigating the journey was the main resource used by all teachers for rse the resource is available in different volumes for year 1year 10 learners and each volume covers the same five themes hence learning progression is evident across the years of the resource as the following exchange from school 3 evidences i think one of the big parts of the navigating the journey that ive really appreciated is that youre building a culture of inclusion and youre basing it around the learner and youre having conversations that are really important from a variety of ages and its continued i really like the fact that you build from a 5yearold and its that progression it is interesting to note that navigating the journey was the only teaching and learning resource that teachers knew about despite the ministry of education producing two curriculum in action resources for rse in 2017 this raises the question of how teachers and schools can stay uptodate and informed about new resources to support teaching and learning and how the ministry of education could be more proactive in communicating what they offer to schools conclusion as evidenced by our analysis of findings from our collective case study a wide range of people in the school community are involved in partnerships when it comes to rse in the classroom and rserelated issues in the wider school environment while it can be challenging to invite whānau and student input into rse and to collaborate within and across schools our findings indicate the power of voice collaboration and partnerships in helping to shape rse practice as advocated for by literature in the field collaboration with colleagues within or across schools and support from those in governance and leadership positions in schools are important in order to provide conditions under which rse can flourish including the ongoing development of teacher capability and confidence to plan and teach responsive learning experiences in rse which connects strongly to the guidance provided by the ministry of education and the evaluative work of the ero the requirement to consult with the community around the delivery of health education is unique to the subject which presents both opportunities and challenges for schools adding a pandemic to the mix implementing meaningful consultation opportunities may not always be easy but as our findings demonstrate teachers and schools are working to provide whānau a range of opportunities to have their say about the delivery of health education and rse learning robinson et al found that parents were overwhelmingly supportive of rse and this is reflected in our findings below we pose questions to spark thinking about the implications of our study for a range of members of the village • how can those in governance and school leadership work to support teachers and work in partnership with whānau students and wider agencies to work towards a responsive rse • how can school leaders and teachers collect and leverage off student voice in order to inform rse practice • what partnerships could be developed between colleagues across schools and between teachers and wider support services and agencies in ways that support effective practice in rse • what possibilities for doing things differently in the future arise from the commentary expressed by our participants a methodological strength of our study was that the workshop part of the hui enabled opportunities for the participants to discuss with each other the strengths and the areas for development in their school therefore providing data that aligned with the discovery and dream aspects of the appreciative inquiry cycle having preprepared prompts on specific aspects of practice that were connected to the rse guide enabled rich conversations about strengths in existing practice but also possibilities for the future this conversation was more organic and participantdirected than the interviewer questions thus adding a valuable layer to the hui the workshop portions also yielded data that was comprised of exchanges between participants as they discussed the prompt points rather than interviewerinterviewee responses that did not explore in as much detail the issue at hand a limitation of our small exploratory study was that we were unable to implement the four stages of the 4d model for appreciative inquiry our future goal would be to work in partnership with teachers and senior leaders in order to not only discover and dream but to design and reach a coconstructed destiny a fully worked approach to appreciative inquiry involves partnership and participation people coming together to explore their world which we were unable to achieve our study has demonstrated that it indeed takes a village to plan for and enact a responsive rse in primary schools that connects to known effective practice and fulfils statutory requirements we have shown that having conversations and establishing and maintaining productive partnerships between the members of the village are not without their challenges but are critical if rse both inside and outside of the classroom is to live up to its potential and meet learners needs funding open access funding enabled and organized by caul and its member institutions publishers note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations

the implementation of relationships and sexuality education as part of health and physical education in the new zealand curriculum ministry of education ministry of education 2007 the new zealand curriculum learning media limited involves a range of people sharing their perspectives in order to shape the subject on paper and in practice this paper presents the findings of a qualitative collective case study in three primary schools in aotearoa experimenting with appreciative inquiry we found that connections and conversations between a wide variety of people and organisations have a critical role to play in relation to planning and teaching relationships and sexuality education in schools i schools and teachers working in partnership with colleagues within and across schools ii connections with whānau and relationships with learners and iii access to wider supports and services our findings suggest that having conversations and establishing and maintaining productive partnerships between a variety of people are critical if relationships and sexuality education is to live up to its potential and meet learners needs

sandrine etiennemanneville b ecoming a researcher was my goal since i was a teenager to achieve this i went to the united states for my masters degree and then started a phd at the institut cochin de génétique moléculaire in paris during my studies i was lucky to find a partner who was reaching towards the same goals we finished our phds around the same time and moved to london for our respective postdocs there i joined alan halls laboratory where i could follow my own projects with the unconditional support of my supervisor i loved every aspect of science having new ideas designing and performing experiments to test them and obtain inspiring results was the driving force that made overcoming the long hours and stresses of the lab easy as my now husband was going through the same struggles everything made total sense nearing my thirties several of my friends already had children but although i had always wanted a family i had not yet taken the step i had been warned that having a child was not the best way to get an independent position i had also seen women having to harshly negotiate some extra time to finish their phd because they had to stop lab work during pregnancy when interviewing for my postdoc i had asked my future colleagues whether having a child while in alans lab was an option to my relief i learned that previous lab members had had children while working in the lab and had gone on to extremely successful research careers my postdoc started on the best termsastrocytes turned out to be a fantastic model to study cell polarity during migration everything seemed doable and i felt strong confident and decided my first paper was nearing completion when i let alan know that i was expecting my first child i was certainly lucky to have such a supportive supervisor but i was extremely naïve and considered pregnancy as the hard part of having a child the nine months flew by with me working as much as before results arrived the paper was accepted and i decided to stop working two weeks before the baby was due in 2001 the european molecular biology organisation longterm fellowship which was supporting my postdoc did not allow extra time for pregnancy and i was planning to stop working for a month then go back to work as soon as possible my son was born 10 days early and i returned to work when he was one month old as did my husband however finding a nanny for such a young child turned out to be very difficult so we decided to take turns doing 8 hour shifts around the clock to keep working and take care of our son until he was old enough to go to child care we would be reading or writing at home when he was asleep and doing our experiments during our individual childfree time although that seemed to work on paper it did not in real life parenting like science is a full time job and the two clashed thinking about your child takes over the time needed to think about the latest publications taking care of them when they are sick makes you forget your experiments your childs sleeping schedule when there is one does not match a wellplanned day of work and night of sleep my life became a nightmare not enough time for my child not enough time for my research not enough sleep i started thinking that science and family were not compatible my turning point came when i realised that i had to give up my old way of working and adapt to the new situation to find a new balance science is flexible you can do it on your own terms a child is much easier to take care of when you are 100 with them and not thinking about the last results you obtained parenthood forces you to compartmentalize organize and stop science when you go home to be totally focused on your child there might be overall less time for scientific goals but the change of focus sheds a different light on the stress and competition of the research world it has been a difficult adaptation for me and it may be easier and even obvious for others but if you know you want it all it is definitely worth it a frequent question women ask is when is there a perfect time to have a child during a scientific career during your phd when time is limited and you must prove to yourself and the world that you can be a good scientist or during your postdoc while chasing an independent position and fighting for publications or as a group leader when an entire lab requires your attention and you are often away at international meetings i now have four children the second was perfectly planned or so i thought at the end of my postdoc before starting my own group back in france the third and fourth were born when i was group leader i do not think there is a perfect time to have a child but you need to be ready to make the time for it having a child might slow down research during pregnancy and for some years after and there might not be a way around that but for those who desire it building a family can ultimately bring balance in a scientific life that is extremely demanding ❐ sandrine etiennemanneville institut pasteur paris cnrs umr3691 cell polarity migration and cancer unit paris france email competing interests the author declares no competing interests

having it all a scientific career and a family sandrine etiennemanneville investigates the molecular mechanisms underlying cell migration in health and disease she is head of the cell polarity migration and cancer laboratory director of the cnrs umr3691 unit at the institut pasteur paris france a professor of cell biology and a mother of four

introduction the prevalence of psychotic disorders including schizophrenia bipolar disorder depression with psychotic features and substanceinduced psychoses and their adverse impact on quality of life is a critical public health issue schizophrenia affects about 21 million people worldwide and is globally among the top 20 contributors to years lived with disability which can be attributed to factors including early adulthood onset and the need for lifelong treatment moreover schizophrenia and affective psychosis have a mortality rate that is 2 to 3 times higher than the general population and subsequently people with psychotic disorders face a 15year reduction in life expectancy the disorder is both debilitating in its symptoms and due to its early onset and protracted treatment course also a financial burden on patients their friends family and the healthcare system overall within pakistan 12 of the population is estimated to be affected by schizophrenia although the exact number is unknown the estimated duration of untreated psychosis is between about 5 months to over 34 months obstacles to treatment initiation and success can be understood through the myriad of factors that hamper provision of mental health services in the region with a population of about 200 million about 22 million are estimated to have a mental health condition yet there are only around 500 qualified practicing psychiatrists in pakistan which results in a ratio of 1 psychiatrist for 400000 people there is also a lack of psychiatric and specialty clinics for diagnosis and treatment of psychosis compounding problems of treatment access as a result many people with psychosis in developing countries receive little to no formal care in addition to the dearth of treatment options for psychosis a host of social factors in pakistan contribute to the development and exacerbation of such disorders such as high rate of emotional expression in the home attribution of symptoms based on cultural misconceptions and poor social support a shortage of alternative housing and community based mental health services means that the burden of care falls on the family members with whom the majority of patients in pakistan with psychosis reside there are also limited resources to support these caregivers and families moreover illiteracy particularly in rural areas where most of the pakistani population resides a general lack of awareness of psychosis and the belief in supernatural causes for such disorders result in a significant proportion of people in pakistan seeking help from faith healers faith healing is a belief that religion or religious practices can treat certain ailments through the use of prayer or other rituals the efficacy of faith healing in south asia is debated while some argue in its favor due to the opportunities for referrals between faith healers and clinicians as shown in african countries and the placebo effect it may offer for mental illnesses such as depression other perspectives point out the potential harm either directly through practices such as involuntary restraint fractures wounds or social barriers eg financial burden on marginalized groups and limited autonomy of people with mental health conditions on the treatments the nature and availability of medical treatment may also cause treatment delays while the exact numbers of the population seeking faith healers for treatment is unavailable a hospitalbased crosssectional survey in karachi revealed that about 32 of the psychiatric patients in that hospital had visited a faith healer in their lifetime this helpseeking preference for faith healers is a key factor identified for the underdetection of and delays in treatment for psychotic conditions in a pakistani study it was noted that 61 of all delayed treatment cases were due to limited awareness and knowledge about treatment options for psychosis for those that pursue clinical or psychiatric services as a treatment option available mental healthcare for schizophrenia in pakistan is largely biomedical ie using medications and electroconvulsive therapy medical and religious healing therapies are either pursued simultaneously or religious healing replaces psychiatric treatment altogether many people with psychosis consult either psychiatrists or faith healers and sometimes both in conjunction and otherwise rely heavily on their informal caregivers therefore there is a need to explore the current treatment options utilized by both formal and informal care providers along with any current or potential intersections in treatment knowledge attitudes and practices around psychosis overall doing so can provide insight into how barriers to both treatment pathways can be improved and how different treatment pathways by care providers could complement each other the aim of this study is to explore referral mechanisms of care providers types of support available and obstacles to treatment as perceived by both care providers and people with lived experience of psychosis methods research questions 1 what is the lived experience of people living with psychosis and their caregivers in pakistan in terms of type of services available to them access to services and quality of services 2 what are the views of clinical and nonclinical service providers about identification of psychosis and the treatment pathways in pakistan study design and context this study was approved by the ethics committee at ucl and ird irb in 2021 this was an inductive qualitative study with focus groups discussions and semistructured interviews utilized as the primary data collection methods ird research and field staff members trained in conducting qualitative interviews conducted these interviews with the aim of exploring perspectives and experiences of treatment pathways of caregivers and people with lived experience of psychosis and both clinical and nonclinical service mental health providers sample size purposive sampling was used to recruit 10 individuals with lived experience of psychosis 10 caregivers five clinical service providers and five nonclinical service providers the former was identified as an appropriate sample size to reach sufficient data saturation and serve the requirements of the objectives and research design utilized in this study ie a broad of range of experiences individuals with lived experience of psychosis and caregivers for the study were recruited through outpatient mental health service organizations both were approached through clinician referral in specialist facilities which included the jinnah postgraduate medical centre department of psychiatry karwanehayat house of pebbles and pakistan association of mental health as each of these institutes consists of service users of varied income class levels we aimed to recruit an overall sample that is representative of the total population of people with severe mental health conditions in karachi clinical service providers were approached through the same services nontraditional service providers such as faith healers were identified and approached through existing networks of the irds community engagement centre in karachi that serves socioeconomically disadvantaged populations in karachis korangi district all 30 participants were over the age of 18 and those that were unable to provide written informed consent or speak in either english or urdu were excluded service users with a prior clinical diagnosis of psychosis and who had been receiving treatment for the past 1 year were recruited the diagnosis of psychosis was defined by the international classification of diseases version 10 classification of schizophrenia schizotypal delusional and other nonmood psychotic disorders andor bipolar disorder with psychotic features those with dementia andor significant cognitive impairment andor severe learning disability organic psychosis or druginduced psychosis as the primary diagnosis were excluded the eligibility and exclusion criteria was shared with mental health clinicians who referred patients based on patient history research shows that people access traditional healing before receiving clinical care so by keeping an inclusion criteria of 1 year for receiving treatment we believe the group will be able to provide perceptions of their helpseeking journey for both biomedical approaches and traditional healing practices the inclusion criteria for service users having a diagnosis of psychosis for at least 9 months also ensures that participants have been on appropriate treatment long enough to manage their positive symptoms and will have the capacity to provide consent for research participation criteria for caregivers included family members living with or providing supportive care for a relative with psychosis or hired carers providing supportive care for an individual with psychosis for at least 2 months clinicians working as a mental health or healthcare professional and nonclinical service providers with previous or current experience in providing support for individuals with psychosis in a nonclinical setting were also enrolled service providers both clinical and nonclinical without regular contact with individual with psychosis were excluded tables 14 provide a breakdown of the study populations socio demographic characteristics by each stakeholder group data collection procedures semi structured interviews for 10 people with psychosis five clinicians five faith healers and two focus group discussions english prior to the data analysis no repeat interviews were conducted the average length of interviews ranged from around 1155 min for service providers 1033 min for people with lived experience of psychosis while the two focus group discussions with caregivers lasted between 55 and 84 min we found that patients preferred to finish their interviews sooner as they took place after their routine appointments and they may have had limited attention for the subsequent engagement a semistructured interview guide was prepared in urdu based on an existing topic guide that was developed through consensus discussions with clinical and public health researchers from pakistan india and the united kingdom for a situational analysis on psychosis treatment protocols within karachi the topic guide was amended for the current study through consultations within the research team to ensure consistency and relevancy for the research aims the interview schedule included general knowledge around psychosis experiences living with psychosis and accessing and utilizing services for people with psychosis and caregivers questions for clinician care providers and faith healers revolved around patient background subject knowledge and treatment feedback and referral mechanisms and promotion of mental health services revisions to the interview guide included exploring the journey of someone seeking care for psychosis recognition of own condition duration of symptoms before seeking care types of entry points for care ie formalinformal experiences and the barriers and facilitators of care seeking through different types of formal and informal care what the service user understood to be recovery or wellbeing within the scope of their condition level of understanding that carers have of their relative s condition duration of symptoms before seeking care types of entry points for care for their relatives ie formalinformal experiences of caregiving for relatives with psychosis and the barriers and facilitators of care seeking through different types of formal and informal care exploring how formal and informal care providers understand psychosis how they assess it in their populations what kind of symptoms they see in practice what kind of treatmentapproaches they use to reduce symptoms or manage the condition what stage patients come to them the feedback and referral mechanism they use for their services how they promote their services and how often they followup with their population data analysis data analysis for idis and fgds were conducted using an inductive approach where themes were identified based upon repeated and important topics for discussion in the interviews rather than on preexisting theoretical concepts an inductive experiential framework was the position from which the current data were analyzed this assumes that the data gives access to individuals meanings lives and realities accurately interpretation of the data is therefore grounded in the assumption that the interview process has allowed access to participants real experiences a critical realist approach was assumed that is that the data allows access to an existing reality truth about stakeholders experience of psychosis and its treatment and that this data provides useful knowledge about how to implement and make recommendations from these practices interview transcriptions were proofread for identifying information and then analyzed using principles of thematic analysis by braun and clarke the first two stages of analysis included familiarization and preliminary coding by authors om and oq after which a final codebook was developed and iterated by zk through open coding this allowed for calibration which we explored informally through differences in coding between oq om and zk interviews were subsequently entered into qsr nvivo and final coding was conducted by authors zk ms and oq the next four stages included searching for themes reviewing themes with the wider research team via consultation defining and naming themes and then articulating findings for the report given the limited resources for the research we were not able to contact participants to provide feedback on the findings results overarching themes discussed in this paper include perception of mental health and psychosis assessment and diagnosis experiences of providing or receiving support living with psychosis and promotion of services subthemes for each stakeholder group are presented in supplementary material 1 perception of mental health and psychosis for people with psychosis their understanding of psychosis ranged from the notion that treatment should be provided for it that it does not improve on its own while another patient believed there is no hope for a cure or improvement and one claimed it was caused by gods will there was also a wide array of causes attributed to its onset including suddenly feeling sick or running away while others reported stress from negative thinking domestic issues increasing cost caregivers also reported some kind of inciting incident or trauma as reasons for onset interestingly individuals with psychosis and caregivers did not seem to explicitly attribute psychosis to supernatural causes however they did initiate seeking support from faith healers clinician perception of the various manifestations of psychosis were dependent on causal attributes substance abuse genetics andor chemical imbalances were identified as the most prominent causes that lead to the development of psychosis types of familial upbringing were also considered a contributor to the development of psychosis symptoms while situational factors such as imprisonment or irregular daily routines were also thought to be responsible one clinician also went on to assign personal responsibility in the development of psychosis and claimed that it was dependent on ones own coping skills faith healers identified three broad spiritual reasons for the development of psychosis which included possession by black magic or evil spirits or satanic influences a lack of faithgods will or worries about domestic issues specific conditions for spirit possession include going to isolated or dirty places engaging in black magic or committing sins against god accordingly prayer or spiritual healing was seen as the most integral if not the only component for healingimproving the patients condition by four faith healers however two faith healers also did report some recognition of a distinction between spiritual possession and psychological issues as causes with the former requiring faith healing and the latter requiring medication in this case one faith healer suggested that prayer can be an initial outlet for psychological relief but if satan is playing with their mind then medical care is required so if it is an issue with spirits that is not something that can be fixed using medication it is necessary that there should be qur anic recitation or through amulets but patients with psychological problems can also be treated using scripture but generally their issue is resolved using medication or medical purpose assessment and diagnosis clinicians conducted assessments through symptoms described or exhibited by people with psychosis and history taking notably the most popular approach for diagnosis was through family reports of history and symptoms and this was regarded as the most valuable mode of information this was linked to the justification that patients did not have sufficient insight into their own condition for accurate selfreporting a lot of these patients do not have basic insight so we have to inquire through their relatives one clinician reported making a judgment on how health literate patients are based on their socioeconomic status and sharing biomedical information accordingly when a patient does come to the clinic we normally examine them based on the healthbelief model we assess their economic status and also look closely at their literacy level if an educated person comes and i tell them the symptoms they will do a google search and all and their queries will be accordingly faith healers did not report any one predominant way of diagnosing patients assessment is done through intuition examining asking about the effects of the condition behavior and certain key tells such as patients that scream and make noise are known to be ones that have an evil spirit possession one faith healer reported a similar sentiment to clinicians where people with psychosis were seen as lacking autonomy or were not acknowledged as independent individuals first is that you have to talk to them with kindness it can happen anytime that the person who is feeling this we dont trust them for example if a child tells me that im feeling this or that then the child is told immediately to sit down and that they dont know anything the child is feeling this so they are telling us we need to trust them and listen and then investigate what the child has said about the problem experiences of providing or receiving support services caregivers described a lack of support available for psychosis overall one participant noted that rural areas do not have institutes equipped to deal with the treatment of psychosis and while cities have institutes to treat mental health illnesses overall the participants provided mixed reviews regarding their effectiveness two caregivers also reported a lack of good quality doctors hospitals or treatment options and some mentioned that even the doctors psychiatrists available do not have the time capacity to treat all their patients despite paying multiple visits for 45 days we could not approach the said doctor so we left this option as it was a waste of time as i told you earlier about the institute in hyderabad where i kept my brother but they asked us to take our patient because either he would kill himself or any other person as he kept fighting i think the people there were not satisfied with their services conversely biomedical treatment specifically medications was also reported to have a positive impact on patient symptoms by three caregivers in focus group discussion one who detailed how medications prescribed by doctors provided effective treatment outcomes two of which described the effectiveness of treatments that were precluded by testing andor a longer diagnosis time hospital name staff is very nice they welcomed us very nicely i have taken medicines from them for my brother and it has improved him a lot people with psychosis had mixed opinions about the benefits of available treatment regarding medication three reported adverse effects such as nausea facial swelling a bad reaction or simply lack of efficacy in improving symptoms five patients claimed that medical treatment led to at least some improvement with one reporting that she experienced a relapse shortly after discontinuation for four people with psychosis overall treatment options took more trial and error to get right medications were either switched or their dosage tapered to reduce side effects while three others switched doctors andor institutes before finding suitable ones obstacles in seeking care included high costs of travel and medication long wait times at the hospital and medication cycles which essentially means that if a patient misses the day of medication distribution they have to wait for the next cycle to acquire it at the respective institution electroconvulsive therapy was deemed ineffective by caregivers in both focus group discussions with one participant reporting that its traumatic effects lasted for years the duration of untreated psychosis ranged from 1 to 3 years social stigma of mental health conditions in pakistani society was flagged as a major obstacle in seeking out treatment and the lack of awareness about psychosis especially among families is a major issue that prompts certain clinicians to provide psychoeducation to caregivers and patients as part of their treatment plan another barrier to treatment as reported by three clinicians includes patients going to faith healers rather than clinicians for their treatment which as reported by one clinician delays treatment the problem here is that patients usually come here after knocking several doors and speaking to pirs a holy man or faith healer believing that their condition might have something to do with jinns spirits in one of my workplaces it is so common for patients to visit us after 810 years of illness one clinician also stated that faith healers sometimes provide the wrong information about psychosis people with psychosis echoed similar sentiments regarding the ineffectiveness of faith healing as a treatment for psychosis three people with psychosis reported that faith healers whose treatments included the use of amulets and holy water were unable to successfully treat their psychosis these were babas in name of rural setting they used to make some amulets and give it to us but these were of no use to us participant he gave me holy water interviewer so that did not work for you no it didnt one person with psychosis also stated that heshe had been possessed by a spirit and that spiritual healing characterized by reciting surahs had reduced the feeling of such a possession although it is unclear who the person faith healers reported approaches that predominantly involved prayer provision of amulets and recitation of holy texts which based on their own reports sometimes also led to the improvement of symptoms spirit possession which was most reported as the cause for psychosis symptoms is also detected and removedtreated through prayer recitation of holy texts use of cleansing oils and the persons own strength of faith four faith healers reported positive results in patients conditions following the use of either prayer amulets or rituals around elimination of spirits when we do pray for them they get better as a result of gods mercy however one faith healer also detailed relapses in patients conditions or instances where patients screamed in pain or were burned with oil when these approaches do not work responsibility is attributed to the patients own strength of faith or the evil spirit one faith healer also reported using medication to treat patients for such an instance our usual method is such that whenever we find someone if they have a one time issue then we give them taweez and other treatment items together we tell them that if they start feeling better after 40 days they should definitely come and tell us about it if we find however that their issue is longer lasting then we give them the medication for 11 or so days when they return after 11 days we check them and see whether they have reported any improvements clinicians reported that the cost of care can be high and certain organizations provide free of cost medicationtreatment in our sample medication was provided by four clinicians and the dosage time of administration and type varied based on the stage and symptomatology of psychosis three clinicians also reported providing counseling and psychoeducation and claimed that it helps with medical adherence caregivers also shared the perceived burden of caregiving which was reported as a negative experience by family members with psychosis one caregiver reported that their own mental health is affected during the process of providing support to people with psychosis and that they have to suppress their own needs for the sake of the patient an overall lack of psychoeducation provided by service providers and a subsequent lack of awareness among people with psychosis and their caregivers is reflected in the findings around seeking support and perceptions of causes the types of information provided to caregivers also play a role in accessing support two caregivers reported that faith healers directed them toward doctors out of which one claimed that they had wasted a lot of time going to faith healers based on others recommendations promotion of services clinicians primarily gained service users through referrals by other clinicians andor facilities or references by relatives or service users psychiatrists that practice for a long time also reportedly attract service users based on their reputation or popularity so i talk about myself it has only been 23 years since i have started practicing so either my colleagues refer patients to me or i get them through this hospital or even my immediate circle refer patients to me dr name is very reputed in this field patients mostly come here from various areas of pakistan to have consultations with him frontiers in psychiatry 07 frontiersinorg three clinicians also reported different methods of selfpromotion including setting up mental health camps conducting awareness sessions on psychosis the use of billboards distributing pamphlets in the community or following up with registered service users in the area we go into the community one day before camp and the next day set camp if the camp is decided on monday so we go into the community on friday for ground activities and for the registered patients of that area we have their contact number and full data we call them prior for their follow up session like clinicians faith healers also reported that most visits by service users occurred due to references by others and usually from people that were previously treated two faith healers also discussed a demand for spiritual treatment specifically by godfearing individuals and there was a perception that generally people in the faith healers communities gravitate toward religious leaders and or treatments in our community people have this awareness that if there is something wrong with us then we need to go to gods house two faith healers also mentioned utilizing selfpromotion techniques such as either the use of social media platforms or announcements in mosques about specific services offered living with psychosis people with psychosis reported that living with psychosis included internal psychosocial experiences such as restlessness feeling hyper being worried and stressed out i used to feel worried or anxious experiencing delusions i felt as if i am in heaven and fixating on certain past events i start remembering really old things stuff like x person said this to me y person did this to me i started remembering old thoughts there was also a general perception or hope among participants that treatment andor medication would lead to an improvement in psychosis symptoms all i thought at that moment was that dad is giving me medication i will get better the most common physical sensations that accompanied psychosis were reportedly headaches or some type of mental strain those symptoms were that i would feel heavy headedness with stress on my mind i used to get severe headaches and yes that was it less common symptoms discussed included the feeling of burning experiencing seizures or jerks insomnia breaking things running away feeling hyper forgetfulness dizziness and one participant also reported a loss of consciousness afterwards when i felt angry beyond measure my heartbeat skyrocketed after that people used to tell me oh you had a seizure when i regained consciousness i regained control of my muscles after 2025 minutes of this i started realizing my name who i am who i am not then slowly and steadily i started remembering who i was discussion key findings the exploration of lived experiences described in this study include an account of what it is like to live with psychosis in karachi the various types of services available and utilized by different care providers and barriers to treatment including stigma lack of awareness lack of treatment options and attitudes of careproviders components that appeared to be the most consequential for treatment pathways include implications of clinical and faith healing practices on treatment outcomes and the role of caregivers in aiding some clinicians diagnoses and a subsequent need for their psychoeducation and support services perception of mental health and psychosis and experiences of seeking or receiving care themes cut across all stakeholders groups however clinicians faith healers and people with psychosis differed in their perception of psychosis particularly regarding the attributable causes clinicians focused on biological and psychosocial aspects of psychosis people with psychosis characterized their illness through causal life events and unsurprisingly faith healers provided spiritual explanations interestingly individuals with psychosis and caregivers did not explicitly attribute psychosis to supernatural causes often however they did initiate contact with faith healers experiences of providing care also varied based on participant group in terms of types of support offered with caregivers offering emotional and dayto day support faith healers providing spiritual care in the form of prayers and amulets and clinicians utilizing medication or counseling as their primary mode of treatment people with psychosis were roughly split between whether they found medication useful while more caregivers reported it as beneficial than those who did not strengths and limitations the diversity of relevant stakeholders interviewed in our study deepened our understanding of complex issues around psychosis and provided multiple perspectives doing so also allowed us to corroborate narratives around the experiences of barriers to treatment and identified the need for collaborative approaches between clinical and nonclinical providers to caring and treating people with psychosis limitations of this research are that the recruitment of study participants was done primarily through largescale mental health clinical sites in karachi and so the sample size may not be representative of the larger population of people with psychosis especially those belonging to illiterate groups participants were interviewed after their routine appointments to reduce any additional transportation burden to take part in the interviews however this may have led to limited frontiers in psychiatry 08 frontiersinorg capacity for attention and as a result interview durations from service users were shorter than clinicians and caregivers there is also missing sociodemographic data for seven of the 30 interviewed participants due to time constraints and being unable to collate this information via a follow up call comparison of findings and possible interventions supported by global literature implications of clinical and faith healing practices on treatment outcomes there are various factors that contribute to inaccessibility delays or ineffectiveness of treatment overall and these are based on both the quantity and quality of treatment and availability of service providers regarding clinician treatment specifically patient satisfaction with medication was at times positive although quite a few did report adverse symptoms and more importantly some caregivers stated that doctors lacked time and were difficult to seek out for treatment clinicians echo back similar sentiments with one participant claiming that they limit the number of new patients recruited as those ones require more time initially this is unsurprising as pakistan has a severe shortage of psychiatrists and mental health experts overall and who estimates less than one psychiatrist is available for every 100000 people in most of southeast asia while clinician availability is one aspect of the delay in treatment our study also highlights another possible deterrent from timely and appropriate medical treatment pursuing faith healers with the onset of psychosis largely attributed to supernatural causes by faith healers it can be inferred that people with psychosis and caregivers who go to faith healers are not informed of biopsychosocial causes and treatments moreover our results showed that faith healer treatment practices can be characterized as quite extreme and risky such as using oil to eliminate spirits and service users being burnt or subjected to pain another country where faith healing is highly prevalent is india and a study conducted in rural gujarat reflects some overlaps with our findings regarding the methods employed in faith healing including the use of prayer amulets and patients ingesting smoke or the use of fire this further emphasizes the scale and consistency of such potentially harmful practices within faith healing treatment overall delays reported in acquiring treatment due to time spent visiting faith healers is a crucial finding in our study this finding is important because rapid access and initiation of appropriate treatments for psychosis is critical and metaanalyses and a longitudinal study on first episode psychosis show that a prolonged duration of untreated psychosis is associated with both a reduction in treatment response as well as symptomatic and functional recovery in first episode psychosis moreover faith healing practices also vary in perception of effectiveness and severity faith healers decision making and rationale for referral to medical treatment is also unclear further highlighting the need for collaborative thinking between clinicians and psychoeducation to help identify and treat psychosis effectively however this is not to diminish the value of spirituality in recovery from mental health conditions entirely as spirituality and religious beliefs have also been shown to be beneficial to mental health in global and asian literature it is also worth mentioning that while repercussions have been reported for faith healers replacing the role of psychiatrists there have been multiple historical and current accounts of abuses experienced by patients within psychiatric facilities as well it can be tempting to implicate a certain provider with inhumane care patients will always be at risk of abuse without effective legal regulations and structural provisions to protect the rights of people with psychosocial disabilities in those settings the two caregiver reports in our study of faith healers referring them to clinicians provide an example of how treatment integration through the creation of referral pathways between faith healers and clinicians could reduce delays in treatment a related intervention is worth exploring how faith healing is a common practice but most faith healers do not seem aware or trained in biopsychosocial practices that could be leveraged to provide more effective treatment for psychosis such studies both emphasize the need for holistic care and a better understanding of psychospiritual approaches for it while considering the potential harm and opportunity costs of not accessing care from other sources this need is punctuated by the limited availability of clinical service providers in the country coupled with the findings from our study which highlight the prevalence pitfalls and opportunities of directing service users to appropriate treatment plans around faith healing this leads to the notion that perhaps it would be beneficial for both clinical and traditional service providers to be trained in and aware of the others treatment practices for the purpose of reducing treatment delays and improving the overall quality and availability of care stigma our study underscores the various levels and types of stigmas that people with psychosis may face even at times from service providers themselves results highlighted that clinicians have beliefs about the onset and causes of psychosis which place undue responsibility on families and people with psychosis themselves for example blaming upbringing as well as peoples capacity to manage stress although psychosocial stressors are a widely accepted risk factor for psychosis they are often not isolated and rather psychosis can be conceptualized as a combination of biopsychosocial stressors similarly faith healers beliefs that ones spirituality and strength of faith is both a contributing factor to psychosis but also an important consideration in its treatment further punctuates the finding that service providers have some internalized stigma when treating people with psychosis conversely clinicians report stigma as a major obstacle that delays people accessing treatment caregivers and people with psychosis share similar views regarding stigma and its consequences including familial isolation and ostracizing neighborhood environments frontiers in psychiatry 09 frontiersinorg the unique burden of caregiving for psychosis and the need for caregiver specific support another crucial component of care provision for psychosis in pakistan is caregivers our results outlined the significant role played by caregivers in the diagnosis and clinical treatment of people with psychosis most notably feedback on symptoms and treatment outcomes by caregivers is often sought and relied upon more by clinicians than that offered by the patients informal caregiving for people with psychosis has a unique burden associated with it most notably giving rise to mental health issues in the caregiver and requiring a large amount of time spent caregiving caregivers in our study detailed giving up ones own desiresneeds for the relative with psychosis experiences of stigma from other family members and community members as previously discussed and the considerable emotional and mental strain of caring for someone with psychosis caregiving is universally reported as posing a significant burden and resulting in mental and physical health consequences a study using ghq28 as a measure of distress among caregivers of people with first episode psychosis revealed a notable amount of distress and caregiving burden studies in india and malaysia report that caregivers of people with psychosis face significant levels of emotional distress in malaysia about 315 of caregivers who participated reported mild to great psychological distress which was found to be associated with community rejection similarly in india caregivers for people with schizophrenia also attributed perceived reduction in social support along with stigma and stress to their emotional distress in providing care globally a study conducted in five sites across the us has reported similar findings caregivers for people with treatment resistant schizophrenia found providing emotional care particularly taxing and reported that both their family and romantic relationships have been negatively impacted by caregiving physical health impacts including insomnia headaches pain and depression were also reported while our study did not reveal any adverse physical effects for caregivers these are worth exploring in the future more importantly these findings highlight the need for caregiver support interventions a randomized controlled trial conducted with primary caregivers of patients with schizophrenia in turkey found that psychoeducation and telepsychiatric follow ups reduced caregiving burden depression and high expressed emotions an rct in pakistan evaluated the feasibility of delivering a culturally adapted family intervention based on a pakistani derived conceptual framework and had promising results with high participation and retention percentages of 90 the demonstrated feasibility of developing psychosocial care pathways for people with psychosis and their families and or caregivers warrants further trials and implementation for relieving the burden of caregiving reported in our study implications of the findings for future research these findings reflect the importance of exploring ways to support caregivers of people with psychosis in pakistan who appear to be facing similar challenges of stigma and social isolation seen in global trends the findings highlight the varied understanding and explanations for psychosis and its symptoms among all groups but especially for people with psychosis trying to make sense of their experiences subsequently our findings also highlight the importance of collaborative working between clinical and nonclinical providers to shorten the duration of untreated psychosis identify and treat psychosis utilizing a holistic approach informed by a biopsychosocial and spiritual framework the impact of bridging referral gaps between clinical and faithhealing practitioners is yet to be explored in a pakistani context timely psychoeducation raising awareness schemes and antistigma campaigns can be beneficial in helping to demystify unhelpful explanations as well as providing a culturally sensitive understanding of psychosis that is informed by an inclusive biopsychosocialspiritual approach integration of psychoeducation and awareness particularly in community settings and where faith healing is predominant should be explored developing culturally relevant psychological interventions to deal with emotional distress caused by pakistanspecific stigma and misinformation could be a potential area for relieving caregiver burden and improving treatment outcomes for people living with psychosis and warrant future research conclusion the results emphasize the significance and prevalence of traditional healing practices for psychosis in pakistan and underscore the need to address the gaps and potential for integrating traditional and clinical practices for increased access and acceptability of mental health therapeutic approaches further exploration into supporting caregivers of people with psychosis and the specific need for raising awareness in pakistan to counter stigma and social isolation shows promise and has been punctuated by the study results data availability statement the raw data supporting the conclusions of this article will be made available by the authors without undue reservation ethics statement the studies involving human participants were reviewed and approved by interactive research and development ird irb202207001 university college london ucl ethics project id number 23291001 the patientsparticipants provided their written informed consent to participate in this study publishers note all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations or those of the publisher the editors and the reviewers any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher supplementary material the supplementary material for this article can be found online at full supplementarymaterial

background psychosis is known to have an adverse impact on an individuals quality of life social and occupational functioning a lack of treatment options for psychotic disorders such as schizophrenia contributes to adverse outcomes for individuals a significant proportion of people with psychosis consult both formal and traditional routes of care this warrants a need to explore perceptions around treatment options provided by diverse care providers as the identification of avenues for support can improve psychiatric alternative treatment and social outcomes methods focus groups discussions fgds and indepth interviews idis were used interactive research and development ird research staff conducted 20 idis and 2 fgds to obtain information about the perspectives treatment pathways and experiences of individuals with psychosis their caregivers and service providers questions for clinician care providers and faith healers revolved around perceptions of psychosis service users background subject knowledge and treatment feedback and referral mechanisms and promotion of services a thematic analysis was used to analyze the interviews and coding was conducted on nvivothe results were categorized into five themes perception of psychosis experience of seekingreceiving care assessment and diagnosis methods promotion of services and living with psychosis across service providers and patients there was a wide variety of causes attributed to psychosis and an overall lack of awareness regarding severe mental health conditions from both formal and informal careproviders biomedical treatment received mixed reviews while some reported it as beneficial the limited number of institutes and clinicians to cater for patients stigma within society and care providers the burden of caregiving and misinformation from faith healers were all significant barriers to treatmentthe results highlight the use of traditional healing practices for psychosis in pakistan which coupled with inadequate referral mechanisms present an opportunity to bridge the treatment gap between clinical and traditional healing practices through integration of treatment within community structures and systems better awareness of psychosis and its treatment methods alongside interventions that reduce stigma could help facilitate helpseeking behavior and reduce the burden of caregiving

in 2021 a monograph by m małeckałyszczek and r mędrzycki entitled people who are poor disabled and homeless in the social welfare system was published by wolters kluwer publishing house in polish the monograph under discussion is aimed at the particularly significant and topical issue of social exclusion of the poor the disabled and the homeless the very idea of the subject of the monograph presents itself interestingly because in the polish publishing market there is no title that would present in detail the subject of social exclusion understood as a specific administrative and legal situation of these three groups of people and the tasks of social welfare aimed at their social inclusion the topic concerns a socially important issue which is also essential for the science of administrative law and practice the content is an extensive topic so the authors selection of the content covered in the book deserves recognition in singling out groups of people for legal analysis of their social exclusion and the possibility of social inclusion through the institution of social assistance and social economy the authors rightly point out that the division adopted by them cannot be isolated because poverty disability and homelessness are factors that can overlap deepening and perpetuating the social exclusion of individuals and families affected as can be seen from the introduction to the monograph and further reading of its contents among its objectives was to analyze the institution of social assistance sensu stricto regulated by the provisions of the act of march 12 2004 on social welfare in the face of social exclusion of poor disabled and homeless people and the impact of social economy on the social inclusion of these people in the first chapter of the monograph the authors correctly presented the prevention of social exclusion as an objective facing the institution of social welfare to be implemented it was rightly noted that social exclusion is one of the more complex social problems currently facing the countries of the european union including poland presenting the concept of social exclusion against the background of the views of the doctrine the analysis of it against the background of the provisions of eu law and national law was appropriately subjected which leads to the obvious conclusion about the lack of a legal definition of this phenomenon in domestic law however this does not prejudge the absence of references to the phenomenon of social exclusion both in european union law mainly in soft law acts and in national law it has been rightly pointed out that social exclusion should be combined with axiology in administrative law which should coincide with the axiology of helping people subjected to social exclusion this axiology is determined by principles such as dignity solidarity subsidiarity freedom and justice for example the authors outline the most important concepts related to the indicated principles in this aspect the second chapter of the monograph contains interesting considerations of social assistance in the face of the phenomenon of poverty and the poor poverty remains inextricably linked with social exclusion and it is multidimensional and diverse and can be a cause and effect of social exclusion according to article 7 of the social welfare act poverty is one of the prerequisites for providing social assistance benefits it is also one of the oldest and most basic reasons justifying the provision of social assistance because the title of the chapter refers to the prevention of exclusion of the poor through the institution of social assistance the chapter needed to consider social assistance benefits for the poor the value of the considerations contained in the second chapter is not only the presentation of individual benefits but also the embedding of the issues raised against the background of the definition and classification of the concept of social exclusion the issues of disability as a cause of social exclusion and the place of disabled people in the social welfare system are the subject of the third chapter of the monograph it should be mentioned that disability is of interest to sociology pedagogy and medical science however the legal perspective on disability and the legal situation of disabled people is also essential the authors rightly point out that in scientific discourse legal acts and colloquial speech the concept of a person with a disability is increasingly being used in place of the concept of a disabled person the term person with a disability appears in the englishlanguage version of the united nations convention on the rights of persons with disabilities instead of the term disabled person because the noun form does not specify a characteristic but only one of the circumstances of life it should be considered particularly important to discuss the issue of persons with disabilities regarding the social welfare act the chapter then discusses the axiology of providing social assistance to persons with disabilities and analyzes the various benefits these persons can apply for under the provisions of the law the considerations in the fourth chapter of the monograph should be considered particularly valuable they are devoted to the phenomenon of homelessness which violates a persons dignity threatens peoples health and often life and causes people in the crisis of homelessness to be socially excluded on an unprecedented scale the authors rightly point out the deficits in the activating forms of social assistance for the homeless but emphasize the importance of such a form which is an individual program for leaving homelessness however the program itself does not solve a homeless persons problems as it is necessary for him to be proactive in solving the problems behind finding himself in a homelessness crisis the issue of a homeless persons failure to comply with the provisions of the program also remains problematic since according to article 11 of the social welfare act a homeless persons failure to cooperate with a social worker may be grounds for limiting the amount or size of a benefit refusing to grant a benefit revoking a decision to grant a benefit or withholding cash social welfare benefits this is not about the homelessness exit program itself but about the benefits accompanying it for as the authors emphasize the program of leaving homelessness is a plan and each case of failure by a homeless person to comply with its provisions should be approached taking into account the complex and multifaceted life situation in which such a person finds himself the monographs fifth chapter presents the importance of social economy for the social inclusion of those most vulnerable to social exclusion the social economy is an essential instrument for counteracting social exclusion but the poor recognition of its concept and forms affect its effectiveness in the fight against social exclusion the authors are correct in claiming that a gradual and permanent change in this approach is necessary as social economy entities are the most sustainable and flexible form of social assistance sensu largo of particular interest in chapter 5 are the examples of social economy entities in the sphere of counteracting social exclusion this is because it is in social economy entities that one should see an effective and innovative tool for supporting social inclusion of people who due to their difficult situation caused for example by poverty or the crisis of homelessness cannot overcome it on their own hence their reintegration function towards such people is crucial through their importance many of the themes discussed in the monograph constitute the importance of the issues taken up in work the authors undertook a complicated topic while many of the issues presented in the book are still unjustifiably on the sidelines of considerations conducted by representatives of the science of administrative law an undoubted advantage of the monograph is that it is generally well embedded in the conceptual apparatus of the science of administrative law the work was written based on properly selected and substantial literature the work is also characterized by good style and it formulates numerous conclusions de lege lata and postulates de lege ferenda in conclusion the assessed monograph due to the scientific values raised in the review can be a valuable source of knowledge not only for representatives of the legal sciences dealing mainly with the issues of social exclusion social assistance and social economy as well as practitioners with particular emphasis on employees of organizational units of social assistance conflict of interest

this paper discusses the book poor disabled and homeless people in the social welfare system by m małeckałyszczek and r mędrzycki the authors rightly point out that the division they adopted in the title cannot be isolated because poverty disability and homelessness are overlapping factors deepening and perpetuating the social exclusion of individuals and families affected

introduction cervical cancer continues to be a major public health challenge and the most common cause of cancer related death in women worldwide in 2018 and approximately 570 000 cases of cervical cancer and 311000 deaths occurred in 2018 globally as a result of this deadly disease 1 about 7 to 857 million ghanaian women above the age of 15 years are predisposed to cervical cancer in ghana 2 3 4 in ghana nearly 3052 women are diagnosed of cervical cancer and 1556 women die from the disease annually 5 this is attributed to the inability of the disease to be detected at the initial stages delay in the commencement of treatment and lack of facilities for tertiary cancer management 6 despite cervical cancer being a prevalent problem in ghana there is insignificance of information on the perspectives of exploring the perspectives of young adults on cervical cancer screening in the western region of ghana a qualitative enquiry betty pearce 1 lydia aziato 2 gloria achempimansong 3 young adults and many studies have focused on older womens experiences the researchers therefore deemed it important to explore the perspectives of female younger adults between the ages of 1724 regarding screening for cervical cancer which may in turn circuitously encourage them to adopt healthy lifestyle behaviours in a study conducted in ghana revealed that over ninety percent of participants had low awareness level of cervical cancer 2 low awareness level of cervical cancer prevention has also been reported by several studies 78 in saudi arabia 9 also reported a poor level of knowledge on cervical cancer and misinformation with regards to primary and secondary measures of preventing the disease among university students between the ages of 1825 10 revealed that every female aged 21 years and above is likely to get cervical cancer similarly other studies also found those who do not partake in cervical cancer screening 11 and those who engage in sex at an early age 12 as susceptible to cervical cancer in the advanced countries cervical cancer incidence has reduced drastically because of the successful initiation and implementation of screening programmes over the years but the situation is not the same in some african countries that continue to record a rise in cervical cancer cases because of lack of screening programmes ineffective screening strategies and limited screening coverage 13 lack of education low income preference for a female physician lack of knowledge ineffective communication and embarrassment were among the most frequently mentioned barriers to screening uptake 1415 younger people are more infected with the human papilloma virus which is the main cause of cervical cancer because of their connection with numerous risk factors including multiple sexual partners early sexual debut and high hiv incidences which increase the probabilities of developing cervical cancer the study explored the perspectives of young adults on cervical cancer screening in the sekonditakoradi municipality to help in complementing knowledge on cervical cancer screening so that they can adopt healthy lifestyle practices a very positive approach and increase utilization of cervical cancer screening services among young adults will speed up the implementation of successful cervical cancer screening programmes to help prevent cervical cancer mortality in the municipality and ghana at large materials and methods research design an exploratory descriptive qualitative design was used in this study as it allowed the researcher to have a deeper understanding of the personal meaning young adults give to the uptake of cervical cancer screening participants and setting the study was conducted at the effia nkwanta regional hospital located in the sekondi takoradi metropolis the hospital is the only facility with an ultramodern screening centre and trained midwives offering cervical cancer screening services to women thirteen young female adults aged 1724 years seeking health care services at the enrh who met the inclusion criteria that is residents of sekondi takoradi were purposively sampled to participate in the study after data saturation was attained data collection method a semistructured interview guide with open ended questions was used to conduct an indepth oneonone interview to facilitate the collection of data the interview guide for the study was pretested on three young female adults with similar characteristics at kwesimintsim hospital in the effiakwesimintsim municipality to help reframe unclear questions before the main study the prospective participants and the researcher met to discuss the relevance of the study to ensure that participants had a better understanding of the study and to identify those who were willing to participate in the study participants who met the inclusion criteria and expressed willingness to participate in the study were given information with regards to the objectives of the study confidentiality privacy and voluntary participation and were made to sign a consent form participants below 18 years were requested to complete an assent form their contacts were then taken and allowed to choose days convenient for the interview a convenient place within the hospital environment was chosen for the interview and each session lasted for 3045 minutes the data collection process started on the 11 th of april 2021 and lasted for a period of six weeks analysis the sixstep approach to analysis as described by 16 was used for analysing the data each tape recorded interview was transcribed verbatim and coded data analysis was done using thematic content analysis similar patterns of data were categorized and categories were coded using descriptive subheadings to form the subthemes related subthemes were then grouped to form themes themes and subthemes were examined further for appropriateness and recategorization based on the study objectives ethical considerations ethical clearance was sought from the ethical review committee of the ghana health service research and development division accra and permission was also obtained from the effia nkwanta regional hospital the purpose potential benefits and risks of the study were explained to participants they were also informed of their right to withdraw from participating at any point in the course of the study without any consequence the actual names of the participant were omitted instead identification codes were assigned and used in the work in order to ensure anonymity the audio recordings and transcribed data were stored electronically with a password known to the researchers alone field notes and all forms signed by the participants were kept under lock results demographic data of participants thirteen female respondents aged 17 to 24 years with eight having tertiary and 5 with secondary education were involved in the study table 1 presents the sociodemographic characteristics of participant participants were given the pseudonyms of p1 participant 1 to p13 four main themes 16 subthemes with their corresponding sample codes were identified from the data as shown in table 2 knowledge on cervical cancer and screening methods the first research objective was to explore the knowledge of young adults in the sekondi takoradi pelvic pain or there will be bleeding from the vagina even when one is not menstruating… …it normally causes vaginal bleeding and also pains during sexual intercourse… prevention avoiding multiple sex partners quitting smoking and limiting the intake of hormonal contraceptives were listed as preventive measures by some participants of the study …we need to avoid smoking and also avoid having multiple sexual partners the use of hormonal contraceptives should be avoided or its intake reduced to prevent it… complication all the participants apart from one had something to say with regards to their view on the complications of cervical cancer most of them were of the view that cervical cancer can cause infertility and death …yes infertility when there is abnormality in the cervix it doesnt pave way for fertilization to occur causing somebody to be barren it can also cause infection and lead to death … source of information sources about cervical cancer and cervical cancer screening refers to where the individual retrieved their information about cervical cancer with respect to the source of information regarding cervical cancer majority of the respondents revealed they heard it through the media and research … when i heard it for the first time i did research but did not actually get more information i heard it from the television because i like watching telenovela series and also healthy life series that is where i heard about cervical cancer… cervical cancer screening method the screening test involves a pelvic examination during which a smear of cervical cells is taken for the pap smear test visual inspection with acetic acid could metropolis on cervical cancer and its screening methods knowledge in the study refers to what is learned or understood on cervical cancer and its screening methods by the participants used for the study adequate knowledge on cervical cancer and its screening can motivate young adults to participate in cervical cancer screening in answering this research question seven subthemes emerged cause and risk factors most cervical cancers are caused by longstanding infection with one of the human papilloma viruses and has several predisposing factors participants for the study generally knew human papilloma virus causes cervical cancer even though some did not know it is the most essential cause of cervical cancer … cervical cancer is caused by human papilloma virus there are also other important causes that can put a person at risk of developing cervical cancer… … we have something called hpv it is a virus but i dont know much about it but i know that one too can cause cervical cancer in a person… some of the participants mentioned that those with multiple sexual partners and those who smoke are predisposed to developing cervical cancer because if a person engages in sexual activity with lots of people the likelihood of that person contracting other sexually transmitted infections is high smoking and engaging in sexual activity with a lot of people are risk factors because the person may be having other sexually transmitted diseases like gonorrhoea syphilis and the rest which suppresses the immunity signs and symptoms all the thirteen participants interviewed had some sort of information in relation to the signs and symptoms of cervical cancer most of the participants listed vaginal bleeding pelvic pain and back pain and pain during sexual intercourse as some signs and symptoms of the cancer … the person usually complains of back pain and perceived beliefs and behaviours towards cervical cancer screening the second research objective was to investigate the perceived beliefs and behaviours of participants towards cervical cancer and its screening this considers the key factors that are thought to influence health behaviours of an individual and how individuals conduct themselves towards cervical cancer screening in answering this objective four subthemes emerged screened for cervical cancer participants were asked if they have had cervical cancer screening before and all the respondents said no and majority had varied reasons for saying no some had not gone for the screening because they thought that cervical cancer screening was for women above 30 years pregnant women and older people and indicated that they have not gone for the screening because they are yet to get to that stage … no please i only know that cervical cancer screening is for pregnant women and older people and so they have to go for cervical cancer screening i will go when i get pregnant or grow older but for now am not to that level yet am not even up to 30 years… perceived susceptibility to cervical cancer generally the majority of the participants did not perceive themselves as being at risk of cervical cancer and gave reasons like being virgins and not having multiple sexual partners … because i dont deal with multiple sexual partners which puts a person at risk… … because i am still a virgin and i have not had sex with anybody even though i have a boyfriend i have not had sex with him before and i dont intend having sex unless i have completed my schooling also in my family nobody has suffered from any type of cancer including cervical cancer so i dont see myself at risk of cervical cancer… intensions of screening for cervical cancer intensions perform a very crucial role in bringing a person closer to an anticipated action majority of the respondents had intentions of going for cervical cancer and conveyed their intensions of going for the screening based on what they will derive from it including helping them detect abnormalities in their system … yes i do have plans of going for the screening because it is very necessary i might be having the condition and not been aware of it its through the screening that an abnormality can be noticed and be treated early before complications start developing i will screen when my time is due for the screening… others opined that because the condition affects females and they are in their reproductive ages they will surely go for the screening …i am a female in my reproductive age exposed to candidiasis and other conditions like cervical cancer which usually affects females so will access the screening services… perceived benefits some participants agreed that having cervical cancer screening helps in the detection of abnormalities early in order to receive timely intervention to prevent further harm … i know that if you are tested or you are screened earlier and you get to know that you are negative you protect yourself from it but if you are positive then you go to the hospital for it to be treated very early it helps prevents complications that come along with untreated signs and symptoms at the initial stages… perceived barriers to cervical cancer screening uptake these obstacles or barriers refer to various factors that prevent women from engaging in cervical cancer screening four subthemes emerged from the data collected from participants it comprised lack of information shyness financial constraint and lack of time lack of information most of the participants interviewed mentioned lack of knowledge on cervical cancer and cervical cancer screening as a main barrier to cervical cancer screening uptake … when the person is not educated to know the things that can cause cervical cancer for instance myself like this even though i am educated and have heard about cervical cancer i have not heard about its screening before and people like that will not bother to go for the screening because they are not aware… shyness since cervical cancer screening involves a reproductive organ which is the cervix it is not astonishing that shyness was mentioned as one of the barriers some participants indicated shyness to the fact that some nurses dont keep confidentiality and lack effective communication skills … for confidentiality sake because some midwives like making expensive jokes like your vagina is too hairy because of that they will feel shy and lose trust as for me if am going for cervical cancer screening i will look for someone i can trust well because not all people are able to keep confidentiality… some participants also indicated that because the cervix is a private and a very sensitive area people will not be comfortable exposing it for others to see explaining their unwillingness to access the screening services …people are usually shy because they dont want their cervix a private and a sensitive part of their body to be viewed by others especially those of the opposite sex… financial constraint financial constraint was another factor identified by participants as an obstacle for cervical cancer screening some participants interviewed were of the view that screening requires that people should pay money when it is even difficult for them to get money to buy food to eat … some people dont go because they dont have money the screening is not free you need to pay for it some people too is difficult for them getting money even to buy food to eat so even when you tell them to go they will not go because they dont have the money… … maybe you will be charge with fees that you will not be able to pay… lack of time participants reported that because of work schedule people do not have time for other activities that even affect their health and as such recommended the need for health workers to reach out to people and employers at the workplaces to talk to them on the essence of cervical cancer screening … most people prefer their work to their own health so health workers need to let the people understand that their health matters most they need to get permission from the workplace so that they can go for the screening health workers should let employers know that screening is good so that they can give free time for the women at the workplace to go for the screening… emerging theme strategies for curbing barriers to cervical cancer screening uptake two subthemes emerged and these were public education and reduction of cost of screening public education the participants of the study buttressed on the fact that to overcome the barriers so far as cervical cancer is concerned public health education should be of utmost importance they argued that public education will help to understand what cervical cancer is all about and this will enlighten the women especially those in the rural areas to appreciate the importance of screening … people should be informed on the causes as well as the signs and the symptoms of the condition people should also be given information about the complications of the condition when we educate them well it can also help dispel the fear in some of them so they can go for the screening… reduction of cost of screening some of the participants interviewed had the perception that if cervical cancer screening cost and treatment is reduced more people will engage in cervical cancer screening especially the poor and the youth … i think the screening should be free for now so that the poor people in the society can afford before there will be an outbreak or something i also think the treatment charges after testing positive should be less costly especially with the youth because is difficult getting money to pay for the medicine and the therapies… discussion findings of the present study indicated that younger adults have adequate knowledge on the cause and risk factors of cervical cancer which contradicts several findings in literature 17 18 19 20 this disparity could be the fact that these studies considered older women experiences also studies by 2 in ghana among young adults revealed a low knowledge level of cervical cancer and its risk factors among participants but similar to studies by 21 in which students identified promiscuity and smoking as risk factors for cervical cancer the majority of participants in this study also indicated vaginal bleeding pelvic pain and pain during sexual intercourse as signs and symptoms of cervical cancer while a few indicated vaginal discharges and odours this is consistent with 7 and 22 findings that identified vaginal discharges painful sex and excessive bleeding as cervical cancer manifestations however the present studys findings on signs and symptoms contradict those of 23 who found that the majority of young female students were unaware of any signs or symptoms of cervical cancer and 24 who found that participants lacked adequate knowledge about cervical cancer signs and symptoms the disparity could be explained by the fact that young adults particularly female students are increasingly glued to their mobile phones and eager to seek out any new information to which they are exposed in terms of cervical cancer screening methods the study reported a very low level of knowledge with the majority of participants unaware of any screening method some of the participants in the current study who had heard about screening methods mentioned the pap smear screening as the only method with a few of those who mentioned pap smear been able to elaborate on it this finding is consistent with that of 25 who discovered that the majority of students were unaware of alternative screening methods to the pap smear test 26 also found a low level of knowledge about cervical cancer screening with only 427 of respondents able to name the pap smear test the current studys findings on the other hand contradict those of 27 who reported that the majority of women in their studies had heard of cervical cancer screening a similar study conducted in nigeria discovered that more than half of respondents are aware of the pap smear cervical cancer screening method 28 the disparity may be due to a lack of screening centres in the sekondi takoradi metropolis which discourages young adults from learning more about cervical cancer screening except for one participant in this study every participant had something to say about their perceptions of cervical cancer complications the majority of them believed cervical cancer could result in infertility or death this is consistent with research conducted in ethiopia by 29 which established that cervical cancer is fatal and can result in the death of women who have the disease the current studys findings contradict those of 30 among vietnameseamericans who believed cancer would jeopardize their relationship with their partnerhusband and the difference may be that all participants in the current study with the exception of one were single the majority of participants in this study stated that they obtained their information about cervical cancer from the media and research which corroborate that of appiah 7 who identified the media as the primary source of information about cervical cancer and cervical cancer screening but contradicts studies by 27 where more than half of women who have heard about cervical cancer screening obtained the information from health care providers surprisingly the hospital was not one of the first four sources of cervical cancer information in this study this indicates that hospitals and other health care providers may not be doing enough to raise awareness about cervical cancer either within the facility or throughout the community the majority of participants in this study held negative attitudes and behaviours about cervical cancer all participants had not undergone screening and cited a variety of reasons for their failure to do so including a lack of awareness about screening and incorrect perceptions that screening was only for women over 30 pregnant women and older women this conclusion is consistent with that of 3132 who all observed extremely poor cervical cancer screening uptake among study participants in contrast to previous research indicating a low rate of cervical cancer screening 33 discovered that the majority of vietnamese americans had been screened for cervical cancer the findings from the present study may be explained by the fact that young individuals receive no guidance from health care providers regarding the importance of adopting healthy lifestyle behaviours including cervical cancer screening in terms of perceived susceptibility to cervical cancer the majority of young adults in this study did not believe they were at risk of developing the disease for a variety of reasons and this results contradicts 7 finding that women perceive themselves to be predisposed to developing cervical cancer the discrepancy in data may be due to the widespread notion that cervical cancer affects older women with little or no emphasis placed on younger adults while 34 discovered that perceived susceptibility to cervical cancer influenced cervical cancer screening utilization efforts to increase screening rates should focus on educating younger adults about their susceptibility which will enable early detection and treatment of cancer 35 most of the respondents concur that detecting early changes in the cervix will make it easier for it to be treated although this result did not positively influence their willingness to partake in the screening this concise with findings of 36 reporting that more than half of the study respondents believe that having pap smear tests is important in early detection and early treatment of cervical carcinoma the majority of interviewees cited a lack of knowledge about cervical cancer and cervical cancer screening as major impediments to persons participating in cervical cancer screening the current studys findings are consistent with those of 28 in which the majority of participants cited a lack of proper information about cervical cancer and screening procedures as a reason for not screening as a result there is an immediate need to increase awareness of cervical cancer screening among young adults particularly in our environment this will require a collaborative effort on the part of the government and all parties additionally participants in this study identified shyness financial constraint and lack of time as barriers to cervical cancer screening uptake this finding is consistent with that of 15 according to some of the participants in this study people are shy due to the fact that certain nurses do not maintain confidentiality and also lack adequate communication skills this is supported by a study conducted by 37 which identified ineffective communication skills of health workers as a factor in participants low screening uptake the health professional who collects the sample has a significant impact on womens perceptions of screening while the procedure is brief womens interactions with the health professional who collects the sample and communication throughout the procedure have a significant impact on future behaviour the authors recommend that cervical cancer screening services be integrated into the national health insurance scheme and that a national screening programme be established to increase access to cervical cancer screening services the majority of participants in this study indicated that public education is one of the strategies that can be used in curbing the barriers to cervical cancer screening uptake this research corroborates the findings of a cervical cancer health education intervention study undertaken in nigeria 38 in terms of education participants also indicated that education using the media was very essential and would help overcome the barrier of inadequate information this is consistent with the findings of 39 who demonstrated that brief messages on media can have a beneficial effect on health information awareness the findings imply that educationbased interventions are critical for promoting cervical cancer screening acceptance since they can address important barriers to cervical cancer screening adoption such as fear humiliation and a lack of awareness study limitations due to the qualitative nature of the study only a few participants were required to gain a thorough understanding of young adults viewpoints on cervical cancer screening as a result the findings may be nongeneralizable transferability is possible though with similar situation to ensure that the findings are generalizable a quantitative or mixed technique approach will be appropriate as this will allow for a bigger sample size another significant constraint was encountered during data collection particularly during this period when corona virus pandemic norms such as social distance affect personal interviews and transit between locations to mitigate the impact of this limitation the researcher made personal protection equipment such as facemasks face shields and hand sanitizers available to all participants recommendations several recommendations were made based on the findings of this study the ministry of health and the ghana health service should collaborate with the government to include the expense of cervical cancer treatment in the national health insurance scheme as a form of support and also develop an early national policy for cancer prevention and treatment in the country these agencies should also establish cancer management units in all districts municipalities and regional hospitals throughout the country this makes these units more accessible to patients given the low awareness of cervical cancer screening and the fact that a smaller proportion of participants identified the healthcare facility as their source of cervical cancer information the effia nkwanta regional hospital should conduct regular outreach programmes in the surrounding communities to raise awareness about the disease and educate residents about the importance of routine screening implications for nursing practice in terms of cervical cancer screening methods the study reported a very low level of knowledge with the majority of participants unaware of the screening methods in the light of these issues health educators must emphasize the value of preventative health care and address issues such as access and a lack of awareness about the necessity of routine cervical cancer screening as future health care professionals young adults pursuing careers in healthrelated industries such as nursing must understand the value of routine pap screenings both for their own health and to better educate their customers about cervical cancer risks and prevention in conclusion the purpose of this study was to ascertain the opinions of young adults in the sekondi takoradi metropolis on cervical cancer screening the study found that individuals had negative attitudes and behaviours toward cervical cancer screening and this was demonstrated by the fact that all the young adults had not been screened for cervical cancer ghanas government should develop an early national policy for cancer screening and treatment with a particular emphasis on human papillomavirus vaccinations for all girls and women to prevent cervical cancer cancer education programmes that contribute to the reduction of the economic burden of noncommunicable illnesses must be policy driven and enforced conflicts of interests the authors declare no conflict of interest

background cervical cancer is a major public health issue globally in ghana there is paltry of information on the perspectives of young adults on cervical cancer aim the study explored the perception of young adults between the ages of 1724 on cervical cancer screening at a hospital in the sekonditakoradi metropolis of the western region of ghana methods qualitative exploratory descriptive method was employed in this study 13 participants who met the inclusion criteria were purposively selected for the study respondents were interviewed facetoface using a semi structured interview guide designed based on the research objectives all interviews were audio taped transcribed verbatim and analysed using thematic content analysis results younger adults had adequate knowledge on cervical cancer but inadequate information on its screening methods all young adults in the study had never done screening because they did not see themselves susceptible to the development of cervical cancer and some opined that cervical cancer is a disease for older and pregnant women conclusion participants had an incorrect perception on cervical cancer screening so more education should be put in place in our institutions to increase their knowledge on the dangers of cervical cancer and the screening methods available in its prevention

background social support refers to the emotional and material resources that are provided to an individual through interpersonal communications 1 social support is an exchange of resources between at least two individuals resources perceived by the provider or the recipient to be intended to promote the health of the recipient 23 although numerous definitions have been used to evaluate the concept of social support it falls into two categories objective or received social support indicates what people have actually received or report to have received the other is a subjective or perceived social support which captures an individuals beliefs about the available support 4 social support includes three main aspects each of which may be experienced as positive or negative emotional informational and instrumental 5 in human interactions individuals and groups offer and receive social support social support is a mutual process and a source of interaction that provides comfort assistance and encouragement it enhances successful compatibility and improves satisfaction and efficient life 6 the determinants of perceived social support are primarily divided into four groups 1 sociodemographic characteristics which includes age gender education ethnicitynativity status culture and socioeconomic status 2 social network characteristics such as number of network members and frequency of contact with network members 3 social integration and involvement characteristics which refer to the participation of people in a broad range of social relationships which are measured by marital status living arrangements working status club membership and religious activities and 4 health characteristics which are perceived health status chronic diseases and stress 4 7 8 9 social support has been viewed as integral to health promotion as it assists in satisfying an individuals physical and emotional needs as well as buffering the effects of stressful events on the quality of life 10 if social support is perceived as helpful the individuals health and wellbeing improves whereas lack of social support increases the risk of disease 11 social support is associated with numerous psychological benefits such as improved selfconfidence sense of empowerment efficiency and quality of life similarly lack of social support appears to be related to mental manifestations and weaker health perceptions 12 different studies on different populations have indicated positive perception of social support to improve physical health 113 healthpromoting behaviors 14 15 16 17 18 19 quality of life 20 21 22 mental health 23 24 25 26 and selfconfidence 27 as well as epidemiological studies showed that individuals with low levels of social support have higher mortality rates especially from cardiovascular disease cancer cachexia and infectionrelated mortalities 28 29 30 these studies have indicated the importance of perceived social support wills and cohen reported that for healthpromoting behaviors perceived social support is more important than actual social support they pointed out that if resources of support are not perceived by a person such resources cannot be used 31 iranian culture as a collectivist culture emphasizes social networks and support 32 several studies were conducted in different iranian populations such as hiv positivepatients 33 students 34 adolescents 35 diabetic patients 36 hemodialysis patients cancer patients 37 elders 38 and so on but social support among women of reproductive age has not been investigated in iran despite the fact that women of reproductive age constitute a considerable part of the countrys population in 2006 there were 21 million women of reproductive age about 18 of them lived in tehran and constituted about 60 of the female population in iran 39 the age period of reproduction is associated with a number of stressful events such as pregnancy and lactation certain disorders such as depression anxiety and nutritional disorders are more frequent among women 40 previous studies have indicated the role of social support in reducing stress and improving health 141 this study aimed to determine the perception of iranian women of reproductive age of social support and its associated sociodemographic factors methods study population and data collection this was a populationbased crosssectional study involving 1359 iranian women of 1549 years in tehran recruited using multistage cluster sampling tehran is divided into 22 municipal districts initially 135 domains were selected using probability sampling weighted with the number of families in each district and one block was selected at random from each domain subsequently 10 families were selected from each block using systematic sampling for each family a woman aged 1549 answered the question thus 1359 women of reproductive age were selected for the study all participants were interviewed individually in their homes by a team of interviewers response rate for the study population was approximately 90 if a woman was not at home or was unwilling to participate in the study the interviewer would refer the next right home and to have the questionnaire completed interviewers were trained to administer the questionnaire in a standardized procedure for quality control of data collection implementation of this study was completely monitored by the supervisor team informed consent was obtained from all women and the study protocol was approved by the ethics committee of the tehran university of medical sciences in tehran iran the study protocol and eligibility criteria of the participants have been described elsewhere 42 each participant was interviewed face to face data were collected using questionnaires including sociodemographic characteristics and perceived social support the sociodemographic factors included age marital status education occupation sufficiency of income for expenses crowding index primary support source and ethnicity as well as spouses level of education and occupation for married participants the crowding index was categorized into three levels low crowding average crowding and high crowding the personal resource questionnaire 85part 2 was used to measure the perceived social support perceived social support is more persistently and more powerfully related to health and well being than are objective measures thus this study chose to focus on perceived social support which reflects an individuals feeling that heshe is accepted loved and valued by other members of their social network the prq85part 2 was chosen for this study for its ease of use clarity and proven reliability and validity in measuring perceived social support it has been used in health research because of its convenience of use with subjects of differing age groups and ethnicities therefore offers possibilities for comparison across nations and populations written consent to use the prq85part 2 was obtained from dr weinert prq85part 2 is a 25item scale based on the five dimensions of support namely worth social integration intimacy nurturance and assistance this questionnaire is based on a 7point likert scale ranging from strongly disagree to strongly agree the score for the questionnaire ranges from 25 to 175 for the entire questionnaire and from 7 to 35 for its dimensions 43 in the present study cronbachs α and the intraclass correlation coefficient for this tool were 084 and 09 respectively data analysis sociodemographic characteristics and social support were assessed descriptively with frequency percentage mean standard deviation median and iqr the oneway anova test was used to investigate the relationship between perceived social support and sociodemographic characteristics backward multiple linear regression analysis was used to predict the impacts of each of the independent variables on the dependent variables and to determine the variance assumptions related to multiple regression including multicollinearity normality homoscedasticity outliers missing were assessed independent variables with p 02 on bivariate test 44 entered the backward regression model interaction term analyses were conducted to examine the relationship between predictors of social support and outcome of it also repeat analyses were conducted for the dimensions of social support data were analyzed using spss 16 results participants characteristics more than one third of the women were aged 35 years or older with a mean age of 319 ± 95 years most women were married and housewives almost 70 stated that their monthly income sufficed for their expenses the majority of women identified their spouse or parents as the first persons who provide support for them when they need help almost a quarter of the married participants spouses had a university education and 434 worked in the private sector perceived social support the mean score of social support was 1343 ± 179 the highest scored dimension of social support was an indication that one is valued whereas the lowest scored dimension was the feeling of being an integral part of a group perceived social support and its relationship with sociodemographic factors according to the oneway anova test results there was a statistically significant relationship between perceived social support and education spouses education and occupation and sufficiency of income for expenses primary support source and occupation the variables of education spouses occupation sufficiency of income for expenses crowding index primary support source and ethnicity entered the backward multivariable linear regression model the variables of crowding index and ethnicity were excluded from the model the variables of education spouses occupation sufficiency of income for expenses and primary support source were significantly related to perceived social support the results of multivariable linear regression and the significant results of interaction term analyses were showed in table 3 according to the results of repeat analyses for dimensions of perceived social support only there was a statistically significant interaction of education primary source support in the model 155 p oo4 the results of repeat analyses for dimensions of perceived social support are available as supplementary files discussion in this study perceived social support was relatively high in iranian women of reproductive age women scored highest in worth and lowest in social integration the variables of education spouses occupation sufficiency of income for expenses and primary support source were significantly related to perceived social support the mean score of perceived social support in the present study was higher compared with those in studies by adams et al on rural women in a southern state of the united states 11 hovey and magana on immigrant farmers in mexico 23 and rambod and rafii on patients undergoing hemodialysis in iran 22 whereas it was lower compared with those in studies 2 24 the different results of mean score of social support observed in diverse populations may be due to the effects of a range of sociodemographic social network and personality characteristics and social involvement that have been linked to perceptions about social support 7 women scored highest in worth dimension that is consistent with the results of doucette 45 this dimension explores reassurance of worth as an individual and in role accomplishments this finding showed that women perceived themselves to be secure in their roles and relationships with family and friends as well as revealed that they were comfortable giving and receiving affection and as individuals their degree of selfworth was high women scored lowest in social integration that is consistent with the results of doucette 45 and kuhirunyaratn et al 4 social integration is defined as the existence of social ties and typically includes such indicators as marital status close family and friends and degree of participation in group and religious affiliation 45 social integration through multiple mechanisms is generally associated with better health outcomes integrated individuals are subject to social controls that may promote the adoption of healthful behaviors and prevent risky behaviors also social network members may also act as sources of information regarding appropriate medical care in addition social networks could influence health of individuals by providing effective support 4647 the results of this study showed that subjects to a lesser extent felt involved in outside social activities the fact that most women in this study were housewives and thus tended to be less involved in social activities outside the home may account for the lower scores of social integration in the present study the scores of the different dimensions of perceived social support indicated that in general the participants perceived that they are valued and cared for and in times of need there are supportive companions to help them social support serves as a protective factor against the stressful events of life and provides the compatibility skills necessary for coping with stress 48 due to the stressful physiological events that occur during the reproductive age such as pregnancy and delivery it is essential for women of reproductive age to have social support the highest mean of perceived social support was observed in women who considered their income to be sufficient for their expenses while the lowest score was found among women whose spouses were workers the relationship between high income and high levels of social support has been indicated in previous studies 11322 occupation and income constitute the two major components of socioeconomic status the size of the social network increases with the improvement of socioeconomic status as the latter provides sufficient resources for the development and maintenance of relationships in a social network 49 higher scores of social support were observed in women who mentioned their spouses or parents as their primary sources of support this finding is consistent with those of chen et al who studied women in their postpartum period and reported spouses mothers and motherinlaws as the key social support providers 2 this finding indicates that the social network of family members constitutes an important aspect of social support for women of reproductive age this could be because of this fact that culture and our religious believes plays an important role between family members and family is as the most important provider of social support in iran the importance of family ties has been emphasized in islamic countries islam considers the family as the foundation of islamic society family in iran is considered as the primary support system for individuals in times of crisis 22 limitations there are limitations relevant to the crosssectional design used in this study first the crosssectional design does not lend itself to causal interpretation no cause effect relationships can be inferred second the data are collected at one point in time in a crosssectional research design it measures what exists today and does not attempt to document changes over time past or future third this study lacks generalizability beyond the geographic area of the participants in addition perceived social support assessment of this study is a subjective evaluation it relies on the women perception mood and attitude which change over time therefore the measurement depends on the women perception only implications the findings of this study provide information about perceived social support of reproductive aged women living in iran because women scored lowest in social integration so women must be encouraged to develop positive social bonds in addition we need to understand more about social integration characteristics and the role of the community integration sociodemographic factors must be considered in planning interventions aimed at improving social support for women of reproductive age for example interventions that facilitate an increase in the quality or quantity of their social support should be considered in national programmes for women literature supports the idea that social support influences health as health care expands its view of health beyond the physical into the social realm health care providers must incorporate these ideas into practice to provide more effective care conclusion the findings of the present study indicate that women of reproductive age have relatively high perceived social support they feel they are respected by others but they tend not to become involved in social groups because social support from the family improves the health of women of reproductive age as well as being present in social groups women must be encouraged to develop positive social bonds sociodemographic factors affect social support and must therefore be considered in planning interventions aimed at improving social support for women of reproductive age additional file additional file 1 table s1 multivariable linear regression analysis for factors associated with social integration subscale table s2 multivariable linear regression analysis for factors associated with nurturance subscale table s3 multivariable linear regression analysis for factors associated with worth subscale table s4 competing interests the authors declare that they have no competing interests authors contribution all the authors participated in its design coordination analyses and interpretation of the results and drafted the manuscript of the study mm drafted the first version of the manuscript ab em mm and sn revised the manuscript ab critically reviewed the manuscript all authors read and approved the final manuscript author details 1 department of reproductive health tehran university of medical sciences tehran iran 2 centers for communitybased participatory research tehran university of medical sciences tehran iran 3 department of midwifery tabriz university of medical sciences tabriz iran 4 department of nursing tarbiat modares university tehran iran 5 department of epidemiology and biostatistics tehran university of medical sciences tehran iran

background social support is an exchange of resources between at least two individuals perceived by the provider or recipient to be intended to promote the health of the recipient social support is a major determinant of health the objective of this study was to determine the perceived social support and its associated sociodemographic factors among women of reproductive age methods this was a populationbased crosssectional study with multistage random cluster sampling of 1359 women of reproductive age data were collected using questionnaires on sociodemographic factors and perceived social support prq85part 2 the relationship between the dependent variable perceived social support and the independent variables sociodemographic characteristics was analyzed using the multivariable linear regression modelthe mean score of social support was 1343 ± 179 women scored highest in the worth dimension and lowest in the social integration dimension multivariable linear regression analysis indicated that the variables of education spouses occupation sufficiency of income for expenses and primary support source were significantly related to the perceived social supportsociodemographic factors affect social support and could be considered in planning interventions to improve social support for iranian women

and viewing shall occur and only the adult members of the family are permitted to attend the funeral as for the process of cremation the remains should be reduced to the size of fine sandashes and packed in a container before turning over to the family 2 studies show symptoms of covid19 disease may ultimately progress to the imminent and unexpected deaths of the afflicted patients leading to profound grief and loss to the bereaved 3 unexpected covid19related deaths then tend to bring about appalling reactions to the grieving family lindemanns philosophy of anticipatory grief allows a meaningful experience to the bereaved providing advanced grief work to deal with any unresolved issues and most importantly constructing adjustments postdeath anticipatory grief in lindemanns philosophy includes three main tasks emancipation from bondage to the deceased adjustment to a new environment in which the deceased is missing and formation of new relationships 4 utilizing lindemanns philosophy reactions to imminent death in covid19 may become more bearable to the loved ones the bereaved start to separate themselves from their connection andor relationship to their loved one even prior to the actual death to be able to experience a world where their loved one is no longer physically available finally the preceding two tasks then allow the grieving to form new bonds new relationships are sown and developed anticipatory grief among families of covid19 patients authors contribution jfcy llg and raa did the conceptualization and writing of the original draft and pjds reviewed and edited the manuscript

recent correspondence shows that death and burial practices deem significant in understanding the meaning and acceptance of the untimely and unexpected death of a family member afflicted with the coronavirus covid19 disease these in turn raise the need to address the anticipatory grieving process of the family this paper examines the importance of anticipatory grieving that ultimately affects the lives of the family of the bereaved

background dementia is an umbrella term used to describe a syndrome that is due to many different diseases that affect the brain causing problems with memory language and cognitive abilities that interfere with day to day function 1 age is the most common risk factor for developing dementia 2 although it is not an inevitable part of ageing as those at younger ages can also develop dementia 3 dementia is now considered a global public health concern and currently affects approximately 50 million people worldwide 4 alzheimers disease is considered the most common cause of dementia accounting for between 60 and 80 of all cases 1 while ad and other forms of dementia are less common in subsaharan africa they still account for a significant disease burden in older people in this region in 2010 for example ad was cited as a major cause of disability and mortality in people aged 70 years and above 5 however limited data from the region make reliable estimates of prevalence morbidity mortality and caregiver burden related to dementia difficult 6 dementia places a significant burden on individuals caregivers and their families particularly in lowand middleincome countries including ssa 7 the majority of people living with dementia reside in the home but the numbers differ hugely between lmic and highincome countries in lmics nearly 95 of plwd reside at home compared to 6070 in hics lmics account for nearly 60 of the global informal care hours with women in these settings contributing to the highest proportion of this informal care 8 there is a call for countries in ssa to prioritise develop and implement policies that strengthen research and dementia care and supports 7 ssa generally faces challenges in relation to the care of older people most ssa countries have to contend with fragile and underresourced health care systems with limited health care capacities 9 moreover most investment in health care systems in ssa has focused on managing infectious and childhood diseases rather than on chronic conditions which are more common in the older population 10 while countries in the region have gradually begun to develop national policies aimed at addressing the health and wellbeing of older people 11 12 13 these efforts have thus far been of limited success due to poor implementation monitoring and evaluation 14 the african unions africa health strategy 20162030 seeks to enhance regional and global health commitments in the region generally but fails to mention oldage related health conditions 15 in ssa most caregivers are women 16 they are frequently the only source of support and care for plwd in the absence of adequately resourced integrated health and social care systems there is considerable evidence to show that caring for plwd often demands substantial effort time and resources and hence places a significant burden on caregivers and families 1718 however much of this evidence comes from hics 18 the current review is grounded in a robust and transparent methodological approach to add to the limited knowledge and evidence in relation to caring for older plwd in the ssa context while countries in ssa are not homogenous in any respect they share a range of challenges not the least of which is a lack of priority in managing the care of older people 10 aim the aim of this review was to address the following question what are the experiences with caring for older people living with dementia in subsaharan africa in this review we focused on informal caregivers and we used the definition of caregiver provided by the family caregiver alliance 19 they defined a caregiver as an unpaid individual involved in assisting others with activities of daily living andor medical tasks we were interested in exploring 1 characteristics of articles published on the topic 2 characteristics of caregivers participating in the studies and 3 the experiences of being a caregiver for older plwd in ssa method protocol and registration this systematic review with narrative thematic synthesis followed the preferred reporting items for systematic reviews and metaanalysis statement 20 inclusion and exclusion criteria were developed by the research team the review protocol was registered with prospero 21 and published in june 2019 literature search six databases were searched from inception to may 2020 using mesh headings and key words existing systematic reviews informed the construction of the search strings 622 we used the boolean combinations of alternative terms for dementia caregiving older people and subsaharan africa grey literature databases were also searched for relevant studies and datad database of african theses and dissertations in google scholar the first 20 pages of the search results sorted by relevance were screened for relevant studies 23 we then used the terms dementia caregiving older people and subsaharan africa to search the rest of the databases for relevant articles reports and theses in addition reference lists and citation searches of included studies were examined hand searches were undertaken in the following journals from eligible studies inclusion and exclusion criteria we included qualitative quantitative and mixedmethods studies that were relevant to the review question the review included articles found in peerreviewed journals and grey literature databases written in the english language table 1 provides a detailed description of the inclusion and exclusion criteria study selection search results from each database were exported to rayyan a webbased tool designed to help researchers working on knowledge synthesis projects in the screening and selection of relevant studies after which duplicates were removed two researchers independently screened half of the titles and abstracts to exclude articles that did not meet the inclusion criteria next full texts were retrieved and independently assessed for eligibility by the two reviewers disagreements were discussed until consensus was reached reference lists were checked to identify additional relevant studies for the synthesis quality assessment two of the authors independently assessed each publication for comprehensiveness of reporting we used the mixed methods appraisal tool 24 which was specifically designed for appraising mixedmethods reviews all studies regardless of quality assessment outcome were included in the review table 3 provides the scores assigned to each paper based on agreed outcomes from the two authors data extraction a data extraction form was developed to extract the main details concepts subconcepts and relevant findings from each paper we included data relating to study characteristics key findings that related to the review questions and reported findings on experiences of caregiving andor impact of interventions the key findings were then collated in a spreadsheet for thematic analysis analysis and narrative synthesis to analyse the data we adhered to the principles of thematic analysis and synthesis 44 a threestage iterative process that entails coding identification of themes and the generation of analytical themes the initial stage of the analysis entailed linebyline coding of data from the selected studies that made sense of the experiences with caring for older plwd in ssa in keeping with the thematic synthesis approach we identified related codes and combined these into broader descriptive themes the themes were extracted and analysed inductively and hence were not guided by a predetermined set of codes 45 for quantitative studies we identified common patterns within independent variables in relation to our studys research question and these were merged with those from qualitative studies to describe the results we used the narrative synthesis method an approach that entails systematically synthesising and explaining findings from many studies using text and words 46 results study selection we identified 889 records and of these 382 duplicates were removed a total of 507 titles were screened for eligibility and 141 were excluded following abstract or deliri chronic cerebrovascular organic brain disease organic brain syndrome normal pressure hydrocephalus shunt benign senescent forgetfulness cerebr deteriorat cerebral insufficient pick disease creutzfeldt jcd cjd huntington binswanger korsako africa subsaharan africa western africa central africa eastern africa southern africa screening 329 were eliminated leaving 37 records which were subjected to full text screening a further 18 records were eliminated on the following basis they did not contain empirical data others did not locate the study population in the ssa context and did not focus on dementia caregiving in total 19 studies met the eligibility criteria and were included in the review figure 1 provides a summary of the screening and selection phases of the review process participant and study characteristics the studies reported the experiences of 378 caregivers most caregivers were female relatives and 87 male caregivers one study 33 did not disaggregate the data by gender caregivers were aged between 19 and 90 years care recipients diagnosis was identified as dementia alzheimers disease and picks disease out of the 19 studies included 11 were qualitative in design 2527 3137 42 five were mixedmethods 2830 3840 43 three were quantitative 414748 most studies were conducted in south africa two in tanzania two in ghana one in nigeria and one in botswana two studies 3341 were conducted across multiple sites including nigeria a full description of the studies is provided in table 3 quality appraisal fifteen papers met all the five quality criteria of the mmat and these received a fivestar rating three papers received a rating of four stars one article did not meet the quality criteria and received no rating all studies regardless of quality were included in the review narrative synthesis the 19 studies were included in the narrative synthesis themes extracted from the studies were synthesised into six broader descriptive themes conceptualising dementia the understanding of dementia as a medical condition and the knowledge caregivers family members and the community had about potential causes was described as limited in a number of studies 2730313537 dementia was commonly regarded as a normal part of ageing and there was no local term to describe it 263037 based on this limited understanding some caregivers described feeling devastated and in shock upon learning of the diagnosis of their loved one 32 however some participants had received caregiver training 27 and others 36 had received basic information about ad which they described as very helpful however male caregivers were described as reluctant to know details of the disease and its progression and preferred instead to take one day at a time 40 in some studies 2635 the condition was attributed to witchcraft based on the belief that the decline in cognitive functions was a result of bewitchment low rates of diagnosis was reported in a number of studies 262730 35 36 37 caregiving arrangements female relatives were predominantly the handson caregivers performing daily tasks related to caring for the plwd daughters sisters wives granddaughters daughterin laws and nieces were associated with this role in a number of studies 2529 31 34 35 3739 4143 in a smaller number of studies men were identified as the handson caregivers 25 3133 36 37 40 42 caregivers provided care on a daily basis and in most studies the caregiver lived in the same home with the plwd 2526313741 47 48 49 because of cultural norms associated with caring for older adults in the african setting plwd were not placed in residential care 3447 although one study included caregivers of plwd living both at home and at a longterm care facility 42 one study noted that no residential care facilities were available for plwd within the study location 27 in a few studies 28293341 paid caregivers were engaged in offering supplemental help and were called upon particularly if care needs in the house increased or if the health of the plwd deteriorated and the main caregiver could not cope 33 the impact of caregiving the caregiving role was described as stressful demanding difficult and hence emotionally physically and financially exhausting caregiving became increasingly difficult as the plwd became dependent and care needs increased 27 a number of studies reported relatively high levels of caregiver burden and strain 252734 37 38 39 41 and hence caregiving was associated with poor physical and psychological health outcomes 273039 a greater burden in females was reported in two quantitative studies 3940 and in one study that explored family resilience in caring for plwd the age of the caregiver and that of the plwd appeared to have a significant negative correlation with family adaptation 29 caregiver strain was described as lower in larger households 30 and when tasks where shared among friends and family 34 including in instances where the caregiver was resident with the plwd 41 the most difficult time for caregivers was before a formal diagnosis was determined as the caregiver did not quite comprehend the changing behaviours of their family member 39 some found it difficult to handle the reality presented by the diagnosis and the unpredictable behavioural changes of plwd 4042 in a number of cases caregiver strain was amplified by problematic behaviours from the plwd including aggression irritability and disinhibition 25313247 and some participants talked of being sleep deprived 25 the inability to communicate correctly with the plwd proved a significant stressor for caregivers 40 a lack of support from family members seemed to exacerbate the caregiver burden 2742 caregiving resulted in significant relationship difficulties between the caregiver and the plwd and among family members being a caregiver often meant less free time 32 social isolation 2731 and restriction from leisure and social activities 2731 those caring for a spouse described their relationship as adversely impacted and the caregiving role often created dissent around caregiving duties which seemed to impinge on family relationships 2532 conversely in some studies the caregiving experience strengthened relationships among family members 25 overall caregivers had to adapt their personal lives and that of other family members to accommodate caring for the plwd 42 the burden of providing care was also exacerbated by financial difficulties families had to contend with additional costs relating to caring for plwd while fulfilling multiple family demands 25 26 27 31 32 33 the duration and severity of the illness as well as the familys socialeconomic status intensified the economic burden 41 as most caregivers were engaged in their role around the clock their career development and earning opportunities were impacted 2538 additionally caregivers often cut down on employment or other income generating activities to focus on caregiving 263141 inadequate funds meant that access to basic needs and essential services was affected 263233 some caregivers incurred additional expenses to employ caregivers 282933 and some had availed of private health care services which were more expensive than public healthcare 41 given the uncertainty of the progression of the illness it was difficult to project future health care costs 26 caregiver identity and role some caregivers talked about how their role came about describing it as sudden unexpected new and strange 42 becoming a caregiver was an unfamiliar role that often made them feel overwhelmed and distressed some described their new role as something that did not come naturally to them while others compared their life situation as before and after the diagnosis describing the life after diagnosis as paradise lost 42 for others caregiving was generally viewed as a sense of duty and was motivated by familial expectations and the african cultural norms 2731 when dementia was attributed to the normal ageing process some found it easier to accept and get on with their caregiving responsibilities 31 in contrast to most female caregivers some male caregivers preferred to make sense of their caregiving experience at a cognitive rather than an emotional level 40 presumably as a way to guard against emotional burden and enhance the ability to cope with their situation yet some described their role as rewarding and a way of giving back especially when the person being cared for was a parent or a spouse 273340 in one study 39 spousal caregivers talked of personal growth describing coping well with their current situation and even excelling at tasks their spouses previously took charge of the experience had enhanced meaningfulness in their lives and despite the enormity of their role caregivers upheld an awareness of the potential for a future beyond their current situation 39 the role was also viewed as a characterbuilding experience in one study 31 in a study with male caregivers 32 participants reported having found meaning in their role upon realising their abilities in discharging their caregiver duties another study described the caregiving experience as a challenging and difficult one that called for strong coping mechanisms but one that revealed and taught the caregiver about a disease they had not heard of before 34 managing caregiving despite the caregiver burden articulated in most studies some caregivers were well able to cope and adapt to their new role 3940 acceptance of the diagnosis of the plwd was deemed important to enable coping with the caregiver role 282939 the importance of remaining positive and optimistic in the face of a deteriorating situation praying and reading the bible were regarded as key coping strategies 2829 importantly spirituality and religion were deemed a motivator to continuing caring for the plwd 27 and religious beliefs played a part in ensuring the caregiver stayed positive and engaged in their role 39 however caregivers citing religion as essential to coping were often affiliated with the same religious group and their experiences may not mirror those from other religious groups in two mixed methods studies 2829 qualitative findings found that the use of support from religious and spiritual groups was important in providing strength during difficult times however quantitative findings from these studies showed no significant correlation between the use of this support and a familys ability to cope the family unit was similarly crucial in supporting the plwd and offering support to the main caregiver most caregivers relied on the physical material and emotional support of family members male caregivers turned to their daughters or hired help to manage the practical aspects of caregiving 40 ideally a larger family often meant that caregiving duties could be shared among family members 2829 however the ability for caregivers to tap into the family resource was contingent on familial bonds 2829 and the acceptance and understanding of the illness of their relative 39 quantitative findings highlighted the importance of positive communication patterns flexibility within the family and consistent family routines 29 as key to enhance family adaptation financial stability and ability to manage the symptoms of the plwd had a positive impact on the familys ability to adapt to the new role 28 in addition to family support was the external social support and professional services available to some caregivers support came mainly from caregiver support groups and other caregivers friends neighbours paid caregivers community and religious groups as well as health care professionals 25283234 while not all caregivers had access to a support group 27 these provided an avenue to share the caregiving experience and learn coping skills while enabling caregivers to expand their social network 29394047 in one study with male caregivers 40 few attended support groups citing the high number of female caregivers and the emotional nature of the group as inhibiting factors in other studies caregiving demands precluded the ability to attend support groups regularly 2732 overall caregivers who attended support groups spoke of the benefits they derived from these groups 2736 the need for temporary relief from caregiving duties was articulated in a number of studies where immediate family members friends neighbours and paid caregivers provided respite 2728313436 some families had availed of community respitecare services 273440 in addition caregivers involvement in activities not related to caregiving served as a form of respite and contributed to enhancing the meaning and purpose in their lives 40 some caregivers participated in social activities in the church which served as a respite from their duties 29 given that most family members lacked the experience and insights into what it meant to care for a plwd it precluded their willingness to offer respite care 39 communitybased supports came from several sources including the government religious and local community groups in a few studies caregivers talked of availing of government and nongovernmental supported services such as daycare and homebased care services 3234 support from religious groups came from church members and prayer groups 25293637 in the local community neighbours and in a few cases retirement homes served as an important support structure for caregivers and their families 252729 quantitative findings found community support to be positively correlated with a familys coping ability 28 a number of caregivers sought diagnosis treatment and advice for the plwd from modern health care services 2526363940 because in some cases dementia was linked to supernatural causes some sought traditional healers 27 and others 2627 used a combination of modern and traditional services including spiritual interventions 2537 in a number of cases however the use of modern healthcare was for ailments unrelated to dementia symptoms 37 most caregivers talked of the value of modern healthcare services particularly the medications prescribed 40 and the psychotherapy offered to caregivers and plwd although these services were deemed expensive 39 in other studies caregivers talked of negative perceptions with services stigma and neglect which precluded their willingness to use such services 36 unmet caregiver needs the burden of caregiving was heightened by the lack of knowledge and understanding of dementia no government support 37 and a lack of accessible services or professional guidance as the illness progressed 36 in an effort to fill the knowledge gap some caregivers turned to books and the internet for information 2829 the importance of psychoeducation and development of relevant caregiving skills particularly during the initial stages of the disease was echoed in a number of studies 31 35 36 37 the need to improve the care and support of plwd and their families was a common theme articulated in all studies government support was noted as largely absent 2933363741 the need for government and nongovernmental agencies to play a central role in providing food to families financial support treatment and setting up support and information centres 3137 were regarded as key to reduce the caregiving burden discussion this systematic review and narrative synthesis sought to explore the experiences with caring for older plwd in the ssa region this review identified a relatively small number of studies the majority of which were conducted in south africa only five countries in the region are represented in the identified studies the general dearth of research related to dementia in ssa has recently been highlighted 48 most studies in the current review were judged to be of high quality although one study was assigned no score as it failed to meet the quality criteria for the group of countries included in our study the issues identified related with caregiving in the context of dementia are similar this review identified six themes related to the experiences with caring for older plwd in ssa conceptualising dementia caregiving arrangements the impact of caregiving caregiver identity and role managing caregiving unmet caregiver needs beliefs that dementia symptoms are simply a sign of old age and not the result of a medical condition emerged in a number of studies 2730313537 this might explain the lack of diagnosis or low rates of diagnosis among older people presenting with cognitive decline 262730 35 36 37 in a few studies of the current review 2635 the older persons condition and cognitive decline were attributed to witchcraft which underscores the limited understanding of dementia and is consistent with findings in other studies 649 other studies conducted in the ssa region 650 suggest that while dementia is not recognised as a medical condition in a number of settings it presents a huge caregiver burden closely linked to the knowledge gap is the stigma and discrimination associated with having dementia this often results in social isolation 1751 fear of the plwd and their family and in some cases violence and mistreatment of older people displaying mental illness 49 from our review few studies 27 identified stigma as a significant problem although some caregivers talked of neglect and maltreatment of the plwd at health care facilities 36 there is evidence to suggest that poor understanding of alzheimers disease and other dementias leads to stigma and abuse 52 the perceived lack of stigma from the studies reviewed is likely due to the belief that dementia is a normal part of ageing and that nothing could be done about it to reverse its course 37 while most caregivers yearned for more information and knowledge about dementia male caregivers in one study 40 were reluctant to learn more about the disease preferring to take the situation one day at a time this was presumably a way of mitigating the stress and worry about the future other research 53 has found that male caregivers in particular tend to underutilise support for example opportunities for skills development that could improve their caregiving experience consistent with the wider literature on the experiences with caring for plwd 5455 caregiving was considered a family responsibility and the majority of caregivers were female relatives who provided care on a fulltime basis this is consistent with many african traditional norms where the expectation is for family to support and care for older and frail relatives in some cases caregiving was a collective effort among close family relatives with duties shared within the family 252642 studies conducted internationally among ethnic minorities in which caregiving took on a cultural and collective approach 5657 support our review findings the negative physical social emotional and financial burden associated with caregiving has long been acknowledged in the dementia care literature 1718 in our review these negative aspects seemed to be interrelated the complex care needs of the plwd and the fact that providing care became increasingly difficult as the plwd became dependent proved physically demanding 27 emotionally caregivers talked of stress worry and expressed uncertainty about the future as they struggled to understand and accept the condition of their family member 42 against this backdrop the caregiving role left caregivers with little to no time for themselves or social activities leading to social isolation and loneliness the greatest contributor to the caregiver burden in our review was financial stress this was mainly related to direct and health care costs including the purchase of herbal remedies 26 straining the ability to provide basic needs for the plwd and the family there is evidence to show that caregivers from low income settings tend to avail of the more expensive private health care services based on their experience with poor negative services in the public sector 41 the financial situation of families was exacerbated if caregivers left employment or income generating activities to become fulltime caregivers 25 the lack of government involvement in the care and support of the plwd and their families was a consistent theme across reviewed studies this finding supports others conducted in lmics 6 the global action plan on the public health response to dementia 20172025 58 acknowledges the challenges that governments face in responding to the growing number of those living with dementia globally the approach recommends that countries adopt a public health approach to address the needs of plwd their caregivers and families this would require the development and implementation of national policies that specifically address dementia and dementia care that are currently either at the nascent stages of development or totally absent in most of ssa the importance of education and awareness raising programs to address the prevailing misconceptions around causality of dementia within families was articulated in the studies reviewed we argue that such programs need not only target caregivers and their families but the general public other studies have found locally led initiatives in particular those delivered through religious organisations as effective in addressing sensitive and potentially stigmatised topics 59 such interventions need to be informed and codesigned with local community members to ensure cultural relevance and acceptability indeed studies conducted in more developed contexts such as the us and europe show the need to involve communities in developing interventions for informal caregivers in the dementia context 18 strengths and limitations while a variety of reports exist in relation to dementia in ssa this review is the first that employed a transparent and robust systematic evidence review and synthesis with a focus on caregiving the current review presented here employed a robust and transparent methodological approach in assessing and synthesising the evidencebase specifically in relation to the experiences with caring for older plwd in ssa the literature search involved multiple databases and sophisticated search algorithms all publications were thoroughly screened and appraised yet there is a possibility that some publications may have been missed the review was limited to journal publications or grey literature in the english language alone french portuguese or afrikaans language publications were not included if they did not contain an abstract written in english moreover some countryspecific reports in the grey literature may have been missed the quality appraisal tool for mixedmethods publications mmat is still undergoing further development but thus far it is the most widely used single quality appraisal instrument to characterise the quality of quantitative qualitative and mixedmethods studies and it has been used in similar studies 60 despite some of these limitations the review provides a solid map of the current literature on caregiving for plwd in ssa and these findings can inform the design of support interventions as well as public health messaging and advocacy on dementia in various ssa countries as well as direct avenues of future research through demonstrating gaps in the evidence conclusion this systematic review has highlighted the dearth of research in relation to caregiving for plwd in ssa only five countries contribute experiential research to the body of evidence which limits the generalisability to all ssa the review underscores the need for better information campaigns and support programs directed at family and professional caregivers in this context our review focused on the experiences of informal caregivers in the home setting while the views and experiences of informal caregivers may differ from those working in formal settings our findings can offer valuable evidence that would inform the development of national dementia and care policies and strategies that are currently underdeveloped in ssa our review underscores the importance of including the voices of the informal caregivers and the requirement that dementia plans and policy must address caregiver needs further our review suggests that men are an underrepresented cohort in caregiving which may not reflect the reality on the ground there is a need for more research with male caregivers to address these gaps abbreviations ad alzheimers disease hic highincome countries datad database of african theses and dissertations lmic lowand middleincome countries mmat mixed methods appraisal tool plwd people living with dementia prisma preferred reporting items for systematic reviews and metaanalysis ssa subsaharan africa who world health organisation additional file 1 authors contributions pm and tk conceptualised and designed review pm conducted the systematic search and pm and adb screened titles and abstracts and assessed full texts for eligibility tk and pm conducted the quality appraisal pm extracted the data and drafted the manuscript bl contributed to the interpretation of the data and critically reviewed the manuscript all authors provided input to every version of the manuscript and approved the final version competing interests authors declare no conflict of interest • fast convenient online submission • thorough peer review by experienced researchers in your field • rapid publication on acceptance • support for research data including large and complex data types • gold open access which fosters wider collaboration and increased citations maximum visibility for your research over 100m website views per year • at bmc research is always in progress learn more biomedcentralcomsubmissions ready to submit your research ready to submit your research choose bmc and benefit from choose bmc and benefit from

background in lowand middleincome countries including subsaharan africa little is known about the experiences with caring for people living with dementia the purpose of this systematic review and narrative synthesis was to examine the experiences with caring for older people living with dementia at homein total 366 abstracts were identified and following screening 19 studies were included in the synthesis six themes were identified conceptualising dementia caregiving arrangements the impact of caregiving caregiver identity and role managing caregiving unmet caregiver needsthere is a dearth of research in relation to caregiving for older people living with dementia in subsaharan africa there is need for better information campaigns and support programs directed at family and professional caregivers in this context

introduction in 2018 unaids reported that there were about 640000 people living with hiv in indonesia 1 with the prevalence of 04 among the general population 1 based on the integrated hiv biobehavioral surveillance report in 20182019 national hiv prevalence was 179 136 119 and 21 among men who have sex with men people who inject drugs transgender womentgw and female sex workers respectively 2 in denpasar bali indonesia the 2019 ibbs report showed that hiv prevalence among msm was 381 2 while the 2015 ibbs report showed that hiv prevalence among female sex workers was 48 female sex workers was 56 msm was 360 and incarcerated people 38 3 in view of the high prevalence of hiv among msm and waria compared to the general population addressing hiv prevention in these key populations could result in significant outcomes 4 such as a reduction in new hiv cases 5 consisting of some of the same active regiments used in antiretroviral therapy hiv preexposure prophylaxis has been shown to protect against hiv infection in msm and tgw 67 provided that users are adherent 8 9 10 11 12 individuals need to take prep during periods of high risk of exposure to hiv a concept that has been termed preventioneffective adherence 12 although a plan to establish a pilot study on prep implementation for msm population has been stated in its national strategy and action plan 20152019 for hiv and aids prevention 13 indonesia has not implemented prep and has fallen behind neighboring countries such as thailand 14 where it has been integrated into its universal health coverage since 2018 15 and resulted in an estimate of 1600017000 prep users in thailand as of 9 july 2020 16 although literature suggesting direct prep contribution towards hiv epidemic in thailand is not yet readily available the fact that hiv prevalence has slowed down in recent years in this country should not be overlooked 17 in indonesia none of the three prep regimens suggested by who 18 have been licensed and prep is not accessible through the national health system 19 distribution of arv as prep regulation is also not yet available however at the moment in indonesia prep can be bought online without prescription 2021 despite the fact that arv as used in prep can only be obtained through prescription 19 obtaining prep in indonesia at the moment is also costly for example a onemonth supply of prep can be bought without prescription for 12 million idr 2021 a price that is unaffordable to most one option is to legally procure prep by acquiring a prescription locally and buying the pills from countries where prep use has been licensed such as thailand however the emerging preprelated cost could highly likely prohibit most potential prep users to access prep abroad as they must consider the flyout transportation cost incountry accommodation and meal cost as well as incountry preprelated costs 22 23 24 25 given the current hiv epidemic among msmwaria in indonesia 1 2 3 the inclusion of prep within indonesias hiv response 2425 should be prioritized regardless of the lack of regulatory approval or national guidelines for prep comprehensive and focused studies and preparation to support prep best practice and legal distribution should be established so that enablers and barriers of successful prep implementation can be identified and addressed 91026 data on how the potential users would respond towards prep are needed before the official introduction of prep in indonesia one option to present such data is using cascade analysis based on the steps included cascade analyses can identify gaps in hiv prevention programs and thus help programs be more effective 27 28 29 this analysis aimed to develop potential new prep cascades relevant to the specific stage of prep knowledge and rollout in indonesia and determine factors associated with key steps in the cascade methods data and samples we conducted a crosssectional survey on hiv risk prep awareness and interest in prep among msmwaria attending a nongovernment hiv testing and treatment clinic in denpasar bali indonesia the clinic is a very reputable clinic in its specialized services regarding sexually transmitted infections and hiv for the hiv key populations we recruited 220 participants from august 2017 to april 2018 included participants received a negative hiv test result during their visit were 18 years or older could participate in indonesian language and provided written informed consent procedures all eligible participants were invited to participate in the study by clinic staff after receiving study information and giving consent participants were asked to complete an intervieweradministered survey all participants were interviewed face to face by the first author only therefore double participation could easily be avoided data were collected on a laptop using the surveygizmo online survey platform the survey collected data on participants demographics hiv risks and preventionrelated knowledge sex and hiv preventionrelated behavior prep awareness and knowledge and interest in using prep regardless of participants prior knowledge of prep all participants were provided with scripted information describing prep during the interview given that the interview involved this education about prep we present two cascades in this analysis cascade 1 includes the participants original awareness of prep as a cascade step while cascade 2 excludes awareness as a cascade step compensation of 50000 idr for travel costs was provided to each study participant variables and measures the cascade steps and how they were determined is as follows 1 classified as high risk for hiv infection measured by questions on sexual behavior and sti diagnoses those who reported any sti diagnoses in the last 6 months 1 sexual partner in the last 6 months andor reported condomless anal intercourse with msmwaria partners in the last 6 months were classified as high risk 2 selfperceived high risk for hiv infection measured by the question based on your sexual activities in the last 6 months how likely do you perceive your risk of being infected with hiv of 4 options provided for the participants those answering not at all were classified as not perceiving themselves as high risk 3 aware of prep measured by the question have you ever heard of or received information about prep those answering yes were classified as being aware of prep 4 interested in using prep measured by the question are you interested in using prep to protect yourself from hiv infection those answering yes were classified as interested 5 willing to do prep procedures measured by the question how willing are you to take prep if it involves regular consultation visits including voluntary counselling and testing and liver function check those answering yes were considered to be willing to do prep procedures 6 willing to pay 500000 to 600000 idr for prep measured by the question how willing are you to use prep if it costs 500000600000 idr per month of the 5 options provided for the participants those answering highly unwilling and unwilling were classified as unwilling 7 already in prep measured by the question have you ever used arv as prep before any sexual activities those answering yes were classified as already on prep to be included in step 2 onward participants had to meet the criteria for the previous steps as mentioned above all 7 steps were included in cascade 1 while step 3 was excluded from cascade 2 several covariates were derived from the survey questions social engagement as msmwaria was measured from two questions regarding participants number of msmwaria friends and time spent with msmwaria friends participants answers to these questions were scaled and divided into two groups using the median as the cutoff those with scores above the median were classified as having high social engagement as msmwaria adequate hiv riskprevention knowledge was determined from 8 questions which were used in the 2010 basic health research 30 held by the health ministry of indonesia such as can someone be infected with hiv from a mosquito bite participants answers to these questions were scaled and divided into two groups using the median as the cutoff those with scores above the median were classified as having adequate hiv riskprevention knowledge consistent condom use was derived from 4 questions on anal intercourse with msmwaria partners which included information on condom use and sexual position participants were classified as consistently using condoms if they answered always used condoms to all questions analysis analyses were conducted using stata version 12 we present descriptive statistics of the sample followed by the number and proportion of participants in each of the cascade steps the denominator for the cascades were all participants in the sample the number of participants in each step was determined and percentages were calculated we performed two bivariate and multivariate logistic regression models based on cascade 2 the first model examined associations with selfperceived high hiv risk among those who were classified as at high risk for hiv infection the second model examined associations with interest in prep use among participants classified as at high risk and who selfperceived their risk to be high statistically significant associations 025 at the bivariate level were included in the multivariate models we present odds ratios adjusted odds ratios 95 confidence intervals and pvalues for these associations ethical consideration the protocol of primary data collection has obtained ethical approval from the ethics committee of faculty of medicine udayana university bali indonesia with no 1745un142kep2017 written informed consent were obtained from each participant results the participants ranged in age from 18 to 52 years with a median age of 28 only 64 were aged over 40 years most participants were not married to a woman under onethird was universityeducated threequarters were employed fulltime and 477 reported their income to be more than the bali provincial minimum wage of 2494 million idr per month 31 about one third were classified as having high social engagement as msmwaria and 423 of participants had adequate hiv riskprevention knowledge regarding sexual behavior in the last 6 months 332 participants had sex with women 573 reported sex with one or more regular male partners 582 reported sex with one or more casual male partners and 155 reported having been paid for sex the median number of sex partners was two ranging from one to 25 partners in the last six months half of the participants reported having one sex partner more than half participants reported inconsistent condom use and 118 reported an sti diagnosis thirtysix participants had heard of prep before participating in the study of these 15 heard about prep from friends 13 from the internet eight from social media seven from educational activities conducted at the recruiting clinic and three from health workers a total of 164 participants were interested in using prep about half of the 24 participants who were not interested perceived that they were at minimal risk for hiv infection nine were not interested due to the unwanted side effects while two participants stated that condoms provided adequate protection from hiv only two participants had used prep in the last 6 months prior to the study one procured prep with the help of his clinic although it was not clear where he acquired the pills the other received prep with the help of his overseas friend in the first prep cascade where prep awareness was included threequarters were classified as at high hiv risk and from these 759 perceived themselves to be at high risk of those with high risk selfperception only 17 participants were aware of prep representing an 868 decrease from the previous step in the second prep cascade where all participants were considered aware of prep of the 129 with selfperceived high hiv risk 814 were interested in using prep of those interested 781 were willing to do the prep procedures but only half of those willing to do the prep procedures were willing to pay 500000 to 600000 idr per month for it two participants representing 50 of those willing to pay and only 09 of all participants were already taking prep there was a large percentage of decreases between each step of cascade 2 in multivariate analysis among those classified as having high hiv risk selfperception of high hiv risk was lower in older participants and was higher in those who reported multiple sex partners in the last six months from the multicollinearity testing we found that none of the independent variables was found to be highly correlated in multivariate analysis among those who were both classified as high risk and perceived themselves to be high risk interest in prep use was higher among those who have multiple sex partners higher among those with inconsistent condom use and lower among participants with high social engagement as msmwaria from the multicollinearity testing we found that none of the independent variables was found to be highly correlated discussion this study presented an alternative approach on how to conduct a prep use awareness and interest cascade analysis among the msmwaria key population specific to the bali indonesia setting this study was crosssectional rather than longitudinal and the steps differed slightly from those commonly suggested by studies and who guidelines 8 32 33 34 35 we found a very low level of prep awareness prior to the prep information given during the interview however after being provided with information we found a high level of interest in prep use among those who perceived themselves as at risk selfperception of risk was associated with age and multiple sex partners while interest in using prep was associated with social engagement as msmwaria multiple sex partners and inconsistent condom use research on the various steps in the prep cascade is very limited in indonesia with only one other crosssectional study prep awareness knowledge and willingness in prep use among msmwaria in bali indonesia 36 an important early step on an individuals prep use journey is the capacity to perceive oneself as at risk of hiv infection based on sexual behaviors we found that threequarters of those classified as at risk perceived themselves as such those over the age of 30 were less likely to perceive themselves to be at risk in contrast to thai research in msm and transgender women showing that older participants were more likely to accurately selfassess their risk 37 we also found that participants with multiple sex partners were more likely to perceive themselves as at risk in line with other research 38 a lack of selfperception of risk among those with potential hiv exposures can mean that those who need prep may not come forward for it furthermore if clinicians are not skilled at taking sexual histories and assessing risk patients who could benefit from prep may also be missed 39 efforts to educate the msmwaria community about hiv risk should be strengthened further research on understanding the mismatch between risk and selfperception is warranted awareness of prep is clearly a critical step to prep access and initiation and is often featured in prep cascade analyses 8 32 33 34 around the time of data collection period there were limited prep campaigns in indonesia including in bali therefore we expected low prep awareness among participants to address this all participants were provided with scripted information describing prep during the interview unsurprisingly in this study we identified an exceptionally low level of prep knowledge in the sample only 16 of participants had heard about prep prior to the study even in countries such as ireland and usa where prep is legally available and accessible prep awareness among msm was only 34 and 16 respectively 4041 indeed to be effective prep programs require its potential users to be aware of its existence thus a prep campaign is important if it is going to be implemented in indonesia we found high interest in using prep after participants had been informed about it among those classified as having high hiv risk and having selfperception of risk lower social engagement as msmwaria having multiple sex partners and inconsistent condom use were associated with interest in prep use our finding on social engagement is contrary to most studies of interest in prep which typically find that higher engagement with other msmwaria is strongly associated with higher interest 42 43 44 this clearly warrants more investigation one possible explanation could be that those with strong msmwaria peer networks may be more likely to fear judgement or stigma from their peers about prep use or their sexual behavior such as fear of rejection from partners stigma of promiscuity and chemsex stereotypes labelling and the fear of potential label stigma surrounding the prep medication and its users as has been found in other setting 45 furthermore there is low knowledge of prep and no norm of prep use due to its lack of availability msmwaria are more likely to be ideologically committed to condom use thus those with lower engagement with other msmwaria may feel safer to express interest in using prep when access to prep is scaled up in indonesia efforts will be needed to understand and address such factors in regard to hivrelated risky behaviors in the last 6 months we found that among participants with high hiv risks and have perceived the risks those with multiple msm sex partners and inconsistent condom use were more interested in prep use as were reported by previous research globally 4446 the finding was expected that our participants with higher hiv risky behaviors were more interested in prep use moreover if the 618 participants with inconsistent condom use kept on engaging in unsafe sex of clai it could be challenging to keep the hiv status negative among them without any interventions it indicates the potential costeffectiveness of a prep program upon implementation aside from lack of awareness and knowledge of prep we identified that prep cost is likely to present major challenge to the use of prep in indonesia interest in prep use decreased significantly when the average cost of onemonth prep supply was introduced although prep regimens are in fact the same regimens used in art as in hiv treatment 18 in indonesia hiv antiretroviral drug national supply which were imported centrally by the ministry of health are dedicated for hiv treatment only 47 the current antiretroviral therapy program in indonesia does not give room for the use of arv for prep use purpose 4748 even to sell arv that has been procured from an hiv program is impossible with the current regulation regardless of the legality in indonesia in september 2020 a 30day supply of prep regimen could be procured from incountry online platforms for 76169 usd 2021 while in 2018 in both vietnam and thailand prep cost ranged around 15 usd 4950 in 2016 in singapore the branded prep truvada could cost around 21 usd if purchased locally in singapore at the moment prep in indonesia is exclusive and pricey this reason alone may limit potential users to access prep some limitation to this study may include first as this study involved a relatively small sample of participants recruited from a single clinic it may not be representative of all msmwaria living in bali second the crosssectional study design limited the studys ability to assess changes in individuals over time third social desirability bias from doing the survey with assistance instead of doing it personally in private which might affect participants willingness to disclose risk behaviors or their interest in using prep in this study we found that knowledge regarding prep among participants was originally low however once informed interest in prep was high as expected the structural barriers such as cost and procedures were somehow challenging in the indonesian setting if prep is going to be implemented thus a prep program needs to address this challenge well participants with higher risks were more interested in prep use which indicates an opportunity for targeted rollout of prep once prep programs do get started in the light of this study findings it is paramount that all hivaidsrelated stakeholders in indonesia should continue the effort to increase sexual health and hivrelated knowledge among msmwaria furthermore if indonesia has a goal of preventing the spread of hiv it should give serious consideration to important issues such as how to set up a prep program along with the hiv national guideline in a way that prep benefits are emphasized and promoted more to not discourage potential users as such we can expect that prep could contribute towards reaching zero new hiv cases in indonesia supplementary materials the following are available online at table s1 prep cascade 1 table s2 prep cascade 21 table s3 variance inflation factor among all independent variables funding this research was funded by a seed grant from the university of new south wales sydney australia the apc was funded by the center for public health innovation faculty of medicine udayana university the corresponding author had full access to the dataset in the study and had final responsibility for publication submission decision

indonesia has not implemented hiv preexposure prophylaxis prep despite global calls for its scaleup and there is limited information about attitudes towards prep among its potential users we aim to present a prep cascade among men who have sex with men msm and transgender women known locally as waria in denpasar bali from a crosssectional survey with 220 hivnegative msmwaria recruited from one clinic in denpasar only 164 of participants had heard of prep before from firsttolast steps included in the cascade we found 773 170220 of participants were classified with hiv high risk 759 129170 perceived themselves as being at high risk 814 105129 expressed interest in using prep 781 82105 were willing to do prep procedures 488 4082 were willing to pay 500000600000 idr and only two participants had ever been on prep before 50 of those willing to pay and 09 of the total sample multivariate logistic regression analysis showed that selfperception of high hiv risk was lower among older age groups p 0001 among 3039 p 0002 among 40 and higher among participants with multiple sex partners p 0016 interest in using prep was lower among participants with high social engagement as msmwaria p 0002 and was higher among participants with multiple sex partners p 0020 and inconsistent condom use p 0011 this study has shown a significantly low level of prep awareness among its participants and decreases in interest in prep use due to procedure and cost it suggested that an appropriate prep campaign is needed if prep is going to be introduced in indonesia

інтересу до відповідних продуктів розвитку національної культури та господарства розгляд виставки як продукту дозволяє поновому поглянути на цей інструмент маркетингу в системі івентменеджменту визначити всі можливості які він надає і використовувати їх для отримання максимального ефекту від експонування ринок виставкових послуг неухильно зростає однак існує протиріччя інтересів організаторів та експонентів виставок організатори не можуть запропонувати продукт що задовольняє потребу експонентів у комунікації а експоненти через це не до кінця використовують усі можливості виставки причиною цього є недостатня методична забезпеченість виставкової діяльності а також не врахування оцінки рівня організації виставки та якості послуг що надаються її організаторами ключові слова виставка івентменеджмент виставковий продукт ринок виставкових послуг результативність і ефективність виставки relevance of the research topic the exhibition as a special cultural phenomenon is of great importance in the organisation of societys life activities its multifaceted nature is determined by its political economic and sociocultural significance in the conditions of globalisation there is a growing need for a wide presentation of the achievements of individual people enterprises villages cities regions and countries of the world through various exhibitions the exhibition business is an integral part of the life of society as well as one of the factors that significantly affects the formation of the future outline of the world community it is not only a source of information about the development of the country region industry individual enterprises but also an effective marketing tool of intercultural communication where in personal contact with a partner the exhibitor can identify his needs that is convey to them a significant amount of useful information thereby ensuring in the future a source of income for themselves studies of exhibition activity show that despite the fact that the exhibition is an infrastructural branch of the service sector as a specific organisation with a complex internal structure it is a unique system with feedback an object of event management and a cultural phenomenon all that has been said determines the relevance of this research analysis of research and publications exhibition activity is the subject of research by economists political scientists sociologists experts in the field of international relations as well as cultural experts in the works of such domestic authors as i antonenko 1 y antonyuk i shindyrovskyi 2 l zelenska 3 l lukashova 4 v pekar 5 t povalii 6 t tkachenko t dupliak 7 raise issues related to economic and sociocultural aspects of exhibition activities in the studies of foreign scientists c breden 8 r dowson b albert d lomax 9 v gera 10 s goyal 11 m rohtmaajackson 12 a sharma s arora 13 a shone b parry 14 k söilen 15 d tassiopoulos 16 j tum 17 the importance of intensifying the management of exhibition activities is emphasised for successful business in the modern sociocultural situation despite the considerable volume of literature the activity of exhibitions as specific organisations producing important economic sociocultural services and information has not yet been sufficiently studied this is due to the complexity and ambiguity of the exhibition activity as well as the multifacetedness of the exhibition information and the specifics of the use of information and communication technologies in the modern cultural space therefore the issue of event management of the exhibition business needs additional research the purpose of the article is a theoretical analysis of exhibition activity as a sociocultural phenomenon and an object of event management the research methodology is based on the use of dialectical systemic cultural and interdisciplinary approaches which makes it possible to comprehensively investigate the multifaceted phenomenon of the organisation of exhibition activities presenting main material a modern exhibition is a new form of a complex organisation that is rapidly developing has a certain set of interconnected and interdependent goals its own resources which are used to realise the set goals the originality of exhibitions is that they created and sold not material products but information about products their advantages and features exhibition activity involves purposeful planned activity of the enterprise the ultimate goal of which is to find new consumers consolidate relations with old ones and as a result conclude contracts with them for the sale of products and the development of crosscultural contacts this activity is also an important way of objective selfassessment of the country its technical level of production and services such selfesteem is extremely important not only for an individual enterprise or organisation but also for the country as a whole an objective view of the countrys place in science culture production and the social sphere allows building a development strategy for the future modern society has acquired an informational character information provided in digital form becomes a strategic resource of society and the level of technologies used for its acquisition delivery transformation and use becomes one of the main factors contributing to sociocultural and economic development information becomes the most important strategic information resource of society and occupies a key place in the economy education and culture the exhibition is also a kind of sociocultural phenomenon that affects the cultural spiritual political and economic aspects of life the complexity of research in this area is determined by the fact that an exhibition is a space created by a person for the purpose of presenting ideas objects things created by other people for their presentation to the audience since both the organisation of the exhibition space itself and the selection of exhibited objects are carried out in accordance with the ideas tasks and goals of the exhibition it can be said that the exhibition is a subjective image of the objective world a materialised representation of some idea of it in the space of the exhibition hall individual objects and exhibits appear in a single composition where they are grouped in a certain way and act as parts of a whole that has its own idea and meaning all these given ideas and images meet in the space of the exhibition hall with the subjective ideas of the viewer therefore when organising an exhibition its authors always focus on the currently leading type of perception taking into account the main ideas and perceptions in society the trends of modern exhibition activity are determined by the fact that a person living in a society saturated with information changes and information ideas concepts become the main thing for them they come to the hall for spectators where the exhibits as semiotic signs are combined into meanings forming a single compositionan exposition the exhibition activity of recent years is also determined by the fact that todays world processes are characterised by the collision and confrontation of two main trends globalisation on the one hand and multipolarity and the desire of individual countries to preserve traditional culture on the other at the same time globalisation does not recognise any collective identities it unifies all spheres of social life which leads to the loss of existing stereotypes of behaviour formed moral and ethical concepts and spiritual values therefore life experience shows that with the correct organisation of the exhibition space and the wellthoughtout theme of the products on display during the exposition it is possible to form in visitors an emotional attitude to the surrounding reality to stimulate emotional and figurative cognitive activity in them to contribute not only to the growth of interest in certain products but also the development of the national economy today businesses operate in conditions where one party is better informed than the other does which affects the outcome of a market deal the method of overcoming this asymmetry is information provision this task at enterprises is performed by marketing communications which must not only collect information about market subjects but also disseminate data about their activities exhibitions have proven to be an effective tool of marketing communications this led to the search for an optimal management system for exhibition activities the object of this event system is the exhibition itself and the main subject is the enterprise organising the exhibition at the same time the organiser in ukraine can be a national interregional and regional exhibition centre or any other enterprise in addition the organiser of the exhibition may have several contractors engaged in the performance of various works the subjects of the management event system are also the enterprises participating in the exhibition however they are local entities as they manage only their exhibits not the exhibition as a whole the results of the conducted research allowed us to formulate the concept of the exhibition activity of the enterprise which is defined as a set of processes consciously oriented to the solution of the goals set for the exhibition tasks and criteria for evaluating the effectiveness of their implementation in order to ensure a favourable information field for the enterprise in the implementation of marketing communications an analysis of the communication process that takes place within the framework of the exhibition event is offered from the point of view of the organisation of marketing communications at the same time it should be noted that the main advantages of the exhibition as a communication process are a short message transmission channel quick recording of the consumers reaction to the message immediate feedback and minimal obstacles in the transmission of the message we believe that the main usefulness of the exhibition for exhibitors is that it clearly demonstrates the segment of the marketnovelties filled and empty segments the scale of companies and helps the company determine its place in the market in our opinion the market of exhibition services can be defined as a set of economic relations between its various subjects regarding the sale of an exhibition product subjects of the market of exhibition services interact according to the law of supply and demand in this case the demand for the exhibition as a product is formed by exhibitors and exhibition visitors and the supply by their organisers at the same time the organisers themselves create demand for such components of the product as premises for exhibitions exhibition structures printing products accommodation services food transportation and entertainment for exhibitors for the purpose of analysis it is advisable to consider the exhibition as a multilevel product system within this system at the first level the product is the satisfaction of communication needs between exhibitors and visitors the second level of the system contains the goods in actual execution that is the number and composition of visitors exhibition space exhibition equipment the number and composition of exhibitors the venue of the event its scale and basic services at the third level of the system additional services of organisers and exhibitors act as a product in the exhibition event management it should also be taken into account that the exhibition like any other product has its own life cycle which in our opinion consists of the following stages 1 the youth stage the exhibition is primarily aimed at specialists the terms of participation are available both leading enterprises and those seeking to enter a new market or a new region with minimal costs are involved 2 the stage of maturity the exhibition becomes known the circle of its participants and visitors expands the conditions of participation become more and more strict the struggle for the best places and the opportunity to promote oneself begins the effectiveness of participation from the point of view of business contacts and image becomes maximum 3 the aging stage the exhibition gradually turns into a show a large number of visitors large company stands and increasingly lower value in terms of establishing business contacts and conducting negotiations exposure has only an image effect 4 the dying stage the event gradually loses its participants and visitors participation in such exhibitions has no effect the effectiveness of the participation of various enterprises depends on the stage of the exhibitions life cycle in addition practice shows that the stage of the life cycle of the exhibition can affect the value of the exhibition product it is minimal at the stage of youth and reaches its maximum value at the stage of aging at the moment the main problem of the exhibition industry in ukraine is the divergence of interests of the organisers and the participants of the exhibition the organisers do not sell the need for communication but the exhibition space and thus do not satisfy this need research results showed that the second important problem is a significant gap in the level of preparation and holding of exhibition events in large cities centres of business activity and other regional centres in large cities the organiser is a professional firm for which exhibitions are the main field of activity this company has its own website which provides complete information about the event history of the exhibition feedback from the mass media methodological recommendations for preparing for the exhibition and official documentation here the number of participants is large there are specially equipped premises for holding an exhibition event a high level of personnel training a fairly wide range of services in small towns everything is almost the opposite the organisers are unprofessional companies there is no operational website the number of participants is small the premises as a rule are not equipped and not intended for holding exhibitions the level of personnel training is low and the necessary internal infrastructure is missing all this makes local exhibitions less effective compared to central and interregional ones in order to increase the efficiency of exhibiting the following sequence of the process of managing the enterprises exhibition activities is proposed 1 justification of the choice of exhibitions as a tool of the enterprises marketing policy 2 purpose of participation in exhibitions 3 analysis of exhibitions within the industry 4 selection of exhibitions for participation 5 approval and approval of the schedule of exhibition activities 6 preparation 7 participation or attendance 8 summarising the results of the exhibition analysis evaluation of effectiveness and efficiency within the algorithm of the enterprises exhibition activity process special attention should be paid to the selection of exhibitions it is at this stage that the effectiveness of exposure in general is established a system of effectiveness and efficiency indicators is proposed for the analysis of the organisation of exhibition activities effectiveness involves determining the degree of achievement of the set goal the effectiveness of exposure is the definition of specific indicators for evaluating the use of enterprise resources in the implementation of the strategy it is advisable to evaluate the effectiveness of the exhibition activity of the enterprise in three stages expert evaluation of the performance of the exhibition primary evaluation of effectiveness evaluation of economic efficiency the first stage in determining the effectiveness of the exhibition is an expert assessment of the companys participation in the exhibition as evaluation criteria it is proposed to use the elements of the exhibition product for example the total number of visitors at the exhibitionthe total number of contacts at the stand quality of construction of the exhibition areaquality of stand construction it should be noted that it is possible to change the assessment criteria taking into account the tasks actually set for exposure the next stage of the exhibition evaluation is the initial evaluation of its effectiveness which is carried out within ten days after the end of the exhibition based on quantitative and qualitative indicators quantitative indicators stand visitors number of visitors comparison of the composition of visitors to the stand with data from past exhibitions the share of visitors who make up the target group contact costs for one visitor audience activity negotiations the number of negotiations the number of negotiations that ended with an application a memorandum of intent competitors the size of the stand compared to competitors content analysis of mass media qualitative indicators visitors to the stand the analysis of the composition of visitors is carried out according to the following positions regional composition official position industry status of the enterprise competitors location of the stand equipment compared to competitors participation and presentation of the enterprise at conferences symposia within the framework of the exhibition when evaluating exposure it is suggested to use additional factors that affect the effectiveness of participation in the exhibition in particular analysis of the exhibition budget advertising campaign work at the exhibition development of prospective contacts this will allow to adjust the exhibition concept of the enterprise objectively assess its potential and avoid possible mistakes the final stage of the exhibition evaluation is conducted half a year after the exhibition and consists in evaluating the economic efficiency of the exhibition when calculating it the amount of concluded contracts is taken into account for each hryvnia invested in the exhibition based on the fact that the goals of participation in the exhibition are different in order to evaluate the economic efficiency of the exhibition it is suggested to use the investment return ratio which includes indicators of the cost of one exhibition the cost of contact the share of sales per hryvnia of costs by the end of the reporting period based on the summarized results a general report is formed with an analysis of the effectiveness of the held exhibitions which includes an analysis of the mistakes made and recommendations for the next planning period therefore the mechanism of organisation of exhibition event management proposed in the article will allow enterprisesparticipants and organiszers of exhibitions to more effectively use the exhibition as a tool of communication policy which will undoubtedly improve the information background of enterprises as well as allow more rational use of available resources and more balanced management decisions the scientific novelty of the article lies in deepening the understanding of the nature of the exhibition phenomenon and the peculiarities of its event management in the conditions of the complication of social relations uncertainty and turbulence conclusions the exhibition is a special cultural phenomenon and event management object it is not only a source of information about the achievements of individual enterprises industries regions countries but also an effective marketing tool for intercultural communication the exhibition affects the cultural spiritual political and economic aspects of society it is a semiotic space formed by a person for the purpose of presenting ideas objects things created by other people for their presentation to the audience this is a subjective image of the objective world a materialised representation of some idea of it exhibits as semiotic signs are composed of meanings forming a complete composition it has been established that with the correct organisation of the exhibition space and a wellthoughtout theme it is possible to form an emotional attitude to the surrounding reality in the visitors during the exposition to stimulate emotional and figurative cognitive activity in them to contribute not only to the growth of interest in certain products but also to the development of national culture and economy considering the exhibition as a product allows you to take a new look at this marketing tool in the event management system identify all the opportunities it provides and use them to get the maximum effect from the exhibition the market of exhibition services has a steady growth trend however there is a conflict of interests between the organisers and the exhibitors the organisers cannot offer a product that satisfies the communication needs of the exhibitors and because of this the exhibitors do not fully use all the possibilities of the exhibition the reason for this is the insufficient methodical security of the exhibition activity as well as the failure to take into account the assessment of the level of organisation of the exhibition and the quality of services provided by its organisers to increase the efficiency of exhibition activity approaches are proposed that will allow more rational and effective use of the exhibition as a tool of marketing communications with the aim of creating a favourable information field for making optimal management decisions

the purpose of the article is a theoretical analysis of exhibition activity as a cultural phenomenon and an object of event management the research methodology is based on the use of dialectical systemic cultural and interdisciplinary approaches which makes it possible to comprehensively investigate the multifaceted phenomenon of the organisation of exhibition activities the scientific novelty lies in deepening the understanding of the nature of the exhibition phenomenon and the peculiarities of its event management in the conditions of complicated social relations uncertainty and turbulence conclusions the exhibition is a special cultural phenomenon an object of event management a source of information about the achievements of individual enterprises industries regions and countries as well as an effective marketing tool of intercultural communication it is a semiotic space formed for the purpose of presenting ideas things created for their presentation to society exhibits as semiotic signs form certain meanings emotional and figurative cognitive activity contribute to the growth of interest in the relevant products the development of national culture and economy considering the exhibition as a product allows you to look at this marketing tool in the event management system in a new way identify all the opportunities it provides and use them to get the maximum effect from the exhibition the market of exhibition services is steadily growing however there is a conflict of interests between the organisers and the exhibitors the organisers cannot offer a product that satisfies the communication needs of the exhibitors and because of this the exhibitors do not fully use all the possibilities of the exhibition the reason for this is insufficient methodical support of the exhibition activity as well as failure to take into account the assessment of the level of organisation of the exhibition and the quality of services provided by its organisers

education is an primary determinant of the distribution of resources including knowledge money power prestige and beneficial social connections many researchers have suggested that have noted that social inequalities have a generalized impact on health however due to a lasting relationship between adolescent cognition with education and laterlife health researchers have questioned the reliability and interpretation of educational inequalities in health research such arguments arise in part because of limited data available to examine the nature of causal mechanisms life course analysis is unique in providing us with the tools to examine long background a variety of social factors including education are related to health disease and ultimately mortality for example examining the role of education on occupation educational attainment has been associated with higher status and lower risk occupations throughout life yet there is a social element as well as individuals with higher education tend to have friends and acquaintances who have better health selfmanagement and are healthier for it indeed one theory holds that education is important to health across the life course because it works flexibly and persistently to influence a host of social economic and behavioral factors that ultimately influence disease and death thus education indicates or modifies the risk of a range of mechanisms and exposures that work to influence health at multiple stages for example education may at once influence health behaviors the ability to interpret and to comply with health recommendations the ability to effectively interface with healthcare professionals and the social and physical environment that individuals inhabit since development the theory has since been tested and expanded upon using a variety of different outcomes and measures socioeconomic status has been associated with smoking reduced use of preventive medicine including vaccination or cancer screening colorectal cancer mortality lung cancer mortality suicide cognitive capability and allcause mortality while education could reflect a structural cause of health many researchers have suggested that it sometimes acts as a signal for other underlying factors such as investment in human capital a recent challenge to a causal interpretation of educational has arisen within the cognitive epidemiological literature and broadly suggests that educational attainment is an outcome of individual characteristics such as childhood achievement or cognition that are known to predict an individuals propensity for educational attainment which in turn has little independent effect on healthrelated outcomes following this a rapidlyincreasing body of research suggests that adolescent cognition both influences socioeconomic inequalities and predicts health illness and mortality link et al consider the support for such conclusions and provide detailed analyses examining the support for results linking adolescent cognition and socioeconomic status to selfreported health chronic conditions and mortality in it they find that adjusting for cognition does little to predict health above measures of education and income however these analyses are limited because they do not consider the role of reciprocal effects moreover during the last decades there have been substantial changes in the social structure and in our understanding of the determinants of health that may further force us to question the generalizability of their results policymakers researchers and the public alike are influenced by the causal attribution of disease and as a result highlighting these mechanisms is of primary importance to sociomedical researchers providing guidance on the issue of causation marmot and kivimäki note that three possible roles that cognition may play in predicting health 1 causation cognition is causally associated with risk factors for disease 2 selection cognition influences educational attainment a known predictor of health behaviors and health outcomes or 3 indication both good health and cognition are commonly caused by another agent differentiating between these three mechanisms is important because it can help us to identify tests that can usefully propel research forward health behaviors if either cognition or education causally influence health and mortality the modification of health behaviors are likely to act as a primary causal mechanism for a number of reasons first health behaviors including smoking physical inactivity and heavy alcohol intake influence some of the most prolific causes of death from lung cancer to cardiovascular disease and diabetes and are also associated with higher allcause mortality as well as reductions in physical functioning and cognitive reserve indeed as much as 25 of the risk of mortality at midlife may be directly associated with smoking behaviors second while morbidity or mortality may reasonably be caused by prior individual differences in personality or genetic factors that also influence adolescent cognition health behaviors are modifiable and not likely to be as strongly influenced by such factors indeed health behaviors are routinely modified in whole populations as a result of policy changes to substantial gain for example smoking cessation has been made easier through the use of multiple forms of interventions and ceasing drastically reduces the risk of allcause mortality finally cognitive or socioeconomic resources could both influence health through the active and intentional modification of health behaviors by social actors who use resources to align health behaviors with their current understanding of disease risk and causation indeed one of the most convincing explanations provided for the association between socioeconomic factors and health is that those with more resources actively modify healthrelated behaviors in order to improve health and reduce the risk of disease interrogating why such might be the case freese lutfey posit that those who are better educated have more control over their own actions and have greater influence over the behavior of others in their social networks such internal and external control could reasonably give rise to a socioeconomic gradient in health lifestyles whereby individuals with different socioeconomic statuses engage in lifestyles that are at once derived from individual choices but also carry social signals identifying status indeed those with more education tend to change some behaviors while maintaining others in order to adhere to healthier lifestyles if cognition andor education act to influence health behaviors it is reasonable to think that those who are more highly educated and among them those with the most capability will more rapidly modify their behaviors to comply with new health information and the lifestyles of their social circles counterfactual hypotheses we hypothesize that both adolescent cognition and educational attainment may influence health behaviors in later life but that educational attainment may be concurrently predicted by adolescent cognition we suggest that the adolescent cognition is a main determinant in conjunction with gender and parental social class of the propensity for education this is made evident on figure 1 by the shifting of cognitive distribution between educational outcomes which may not entirely overlap nevertheless we suggest that there will be an overlapping region in which adolescent cognition does not determine educational attainment in the overlapping region we may find an association between adolescent cognition and health behaviors supporting the view that adolescent cognition causes behavioral change similarly differences in health behaviors by education in this region similarly indicate that education is robustly associated with health behaviors absent the influence of cognitive selection figure 1 methods data we propose to jointly test the role of adolescent cognition and education on latelife health behaviors data adequate to answer such a question are rare and require substantial societal investments in sustained support for life course data uniquely for this study we use three internationally comparable studies the wisconsin longitudinal study the medical research councils national survey of health and development and the national child development study each of these datasets is unique and incorporates information from a variety of individuals and over a long period of time and thus provide a robust platform on which to examine such longitudinal hypotheses the us 1939 cohort began in 1957 when 10317 wisconsin highschool graduates born on average in 1939 were recruited health outcomes were measured at age 53 and educational attainment was measured at age 36 data were linked to stateadministered cognitive testing measured at age 16 the gb 1946 cohort follows 5362 singleton births during one week in march 1946 in great britain and has been followed up regularly until most recently in 20062010 adolescent cognition was measured at age 15 educational attainment at age 26 and health outcomes were measured at age 53 the gb 1958 cohort follows 16782 individuals living in great britain and born during one week in march 1958 adolescent cognition was measured at age 16 educational attainment at ages 33 and 42 and adult health behaviors at age 50 we limited analysis to those who had at least secondarylevel qualifications and information on health behaviors at midlife leaving sample sizes of 3685 1555 and5218 for the 1939 1946 and1958 cohorts respectively measures highest educational attainment was measured at ages 36 26 and 33 in the us 1939 gb 1946 and gb 1958 cohorts respectively some education is mandatory in most countries we therefore focus on the difference between university education as an educational experience that is both variable and relatively comparable between countries for clarity we exclude those with mixed qualifications who received secondary qualifications but then received further subuniversity education such as vocational schooling or attended university but did not graduate because the us 1939 cohort is limited to those who graduated from high school we further exclude those without formal educational qualifications from analysis while the us 1939 cohort excludes individuals who did not graduate with secondary qualifications information is available on those who did not continue with secondary qualifications adolescent cognition was measured using a general test of cognitive ability between ages 1516 in the us 1939 cohort cognition was measured using the henmonnelson test in the gb 1946 cohort adolescent cognition was measured using the alice heim4 test of cognitive ability and in the gb 1958 cohort we used a scale combining reading and mathematics scores in the gb 1946 cohort general ability is strongly correlated with factor scores calculated using similar tests of reading and mathematical ability fathers social class was measured in adolescence and has been dichotomized to maximize comparability between countries when missing earlier measures of parental social class were used if still missing we assume that this is due to a missing father and that the household was disadvantaged in a way similar to being from a lower social class analyzing these individuals separately supports this decision we examine three poor health behaviors measured between ages 5053 smoking identifies whether individuals report being current smokers heavy drinking identifies individuals who reported drinking more than 3 drinks per day in men and 2 drinks among women following the average guidance for alcohol intake in both countries in both gb cohorts alcohol intake was measured by asking individuals how many glasses of beer wine spirits and in the gb 1958 cohort sherry over the past week in the us 1939 cohort we used the number of alcoholic drinks imbibed over the past month physical inactivity identifies whether individuals reported being physically active less than once per month on average in the past year for sensitivity analyses we examine the possibility that incorporation of noncognitive skills modifies these findings specifically we examined the impact of incorporating measures of personality in the us 1939 cohort at age 50 using five items from the international personality item pool in the gb 1958 cohort and at age 13 using the pintner scale in the gb 1946 cohort teachers ratings of student excellence high school class ranking behavioral scores illness as a child and birthweight analyses we use logistic regression to estimate the effect of education on each health behavior while adjusting for sex parental social class and adolescent cognition following equation 1 below we provide odds ratios 95 confidence intervals and exact pvalues we use huberwhite robust standard errors sensitivity analyses are used to examine whether β 4 differs by educational attainment to test the robustness of our results to model specification we replicated analyses using propensity scores adjustment on balanced samples which necessitated that we limit our analyses to individuals whose adolescent cognition was observed in the region of overlap propensity score methods provide a more robust treatment estimate especially when selection is a potential explanation for effects though in practice such effects rarely diverge from linear regression these models estimate the propensity for educational attainment using sex parental social class and adolescent cognition and adjust for the propensity score using multilevel logistic modeling we further examined the robustness of these results to subsample structures by stratifying the sample by sex cognitive tertile and by incorporating interactions between adolescent cognition and sex or parental social class results we begin by providing the percentage of each cohort at different educational attainment levels wherein we see a secular increase in the likelihood of higher education across the three cohorts firstly in the us 1939 and gb 1946 cohorts we find that women those from manual social classes and those with lower adolescent cognition were less likely to go to university in the gb 1946 cohort the likelihood of going to university was much improved for women with high adolescent cognition however in the gb 1958 cohort we see substantial differences those with higher adolescent cognition are much more likely to go on to university than they were previously while the impact of parental social class and sex are substantially reduced figure 2 provides the average number of respondents expressed as a percent of the sample who were smokers heavy drinkers and physically inactive during this period people smoke less and are also less physically inactive however heavy drinking increases over time between cohorts from very low in the us 1939 to higher in the gb 1958 cohort histograms show that the range and distribution of adolescent cognitive scores among university graduates differed from those with secondary qualifications the average respondent with secondary qualifications had an adolescent cognition near sample average 085 standard deviations lower than those with university degrees potentially more importantly those with adolescent cognitive scores 1 sds below sample average were unlikely to earn a university degree while those with scores 15 sds above sample average were very likely to receive one next we estimate the association between a university degree and the likelihood of being a current smoker model 1 shows a significant bivariate association between education and reduced smoking model 2 shows similar results for higher adolescent cognition assessing model fit we note that education explains more variation than adolescent cognition model 3 estimates the impact of education on smoking adjusting for sex and parental social class finally model 4 accounts for adolescent cognition showing a robust effect remains for educational attainment but further highlights an attenuation of the independent association between adolescent cognition and smoking compared to model 2 the relationship between adolescent cognition and smoking does not vary by education results from table 3 show the impact of a university degree on heavy drinking models 1 and 2 show no significant bivariate associations between heavy drinking and either education or adolescent cognition except in the gb 1946 cohort where higher educational attainment and cognition were associated with more drinking assessing model fit we note that neither education nor adolescent cognition significantly predicts variation in heavy drinking except in the 1946 cohort accounting for sex and parental social class increases the positive association from education in gb 1958 but attenuates the association between education and heavy drinking in the gb 1946 cohort finally adjusting for adolescent cognition education begins to have an inverse association with heavy drinking in both the gb 1958 and us 1939 cohorts but higher adolescent cognition in the 1946 cohort remains predictive of more drinking we next provide associations between education and physical inactivity models 1 and 2 show significant protective bivariate associations between physical inactivity and both education and adolescent cognition however assessing model fit we note that educational attainment provides explains more variability on average than adolescent cognition adjusting for sex and parental social class does not reduce associations between education and physical inactivity further adjusting for adolescent cognition does not modify the relationship between education and physical inactivity however the association between adolescent cognition and physical inactivity is attenuated in all three cohorts examining the overall relationship allowing the association between adolescent cognition and health behaviors to vary between educational groups while noting that the region of overlap is defined between 1 sd below and 15 sds above sample average we find that there is a reduction in poor health behaviors related to educational attainment however in that region of overlap there is no association between adolescent cognition and the chances of poor health behaviors there is however a robust relationship between education and both smoking and physical inactivity though there is no relationship between education and heavy drinking on average sensitivity analyses sensitivity analyses used adolescent cognition gender and parental social class to estimate the educational propensity score and to attain balance in groups we limited analysis to the region of overlap defined here propensity score methodology showed similar results to those shown above specifically showing a robust link between education and smoking heavy drinking and physical inactivity models including different estimates of childhood and adolescent cognition measured at ages 78 and age 11 in both gb cohorts find that the year that cognitive performance is measured does not generally affect the educational or cognitive estimates however it does limit comparability with the us model modeling an interaction between education and adolescent cognition does not generally modify these results with one exception in the gb 1958 sample university education was less predictive of physical inactivity among those with higher adolescent cognition however adjusting for such an interaction increases the estimated association between a university degree and physical inactivity we assessed the relative impact of incorporating information from those who with mixed qualifications or no qualifications increasing the breadth of the sample increased overall specificity but did not change the conclusions we assessed the influence of noncognitive skills where available by using indicators of personality measured in early life teachers ratings of student excellence after accounting for adolescent cognition high school ranking behavioral scores illness as a child death of a parent during childhood and birthweight these analyses though not comparable between datasets were sometimes relevant to the outcomes but did not attenuate the impact of education indeed in the gb 1958 cohort the impact of education on smoking increased upon the inclusion of respondents behavioral and personality scores discussion in this study we fill gaps in the literature by examining the impact of having a university degree over secondary qualifications on three poor health behaviors at midlife after adjusting for covariates including adolescent cognition and parental social class that predict educational attainment we examined the association between adolescent cognition and educational attainment and explicitly tested the hypothesis that adolescent cognition relates to health through a direct relationship with health behaviors we used life course data from three cohorts in the united states and great britain we used comparable measures and methods to find that while there is cognitive selection into educational attainment educational attainment independently predicted better health behaviors while adolescent cognition did not results support a wealth of prior research that suggests that social inequalities in health behaviors arise out of structural processes limitations our study has a number of limitations that temper our results first because we harmonized the data we were limited to using those who had at least secondary qualifications this resulted in a substantial gain in comparability but a loss in power and in effect size as those who left prior to gaining secondary qualifications are the most likely to engage in poorer health behaviors to ensure comparability across the cohorts we also limited our analysis and thus our generalizability in the gb 1958 cohort to respondents born in britain while we made substantial efforts to ensure that measures were as comparable as possible between cohorts analyses ultimately uses information derived from variations in measurement for example the us 1939 cohort uniquely measured the number of drinks over the past month rather than the past week the gb 1958 cohort measured math and reading scores rather than more general measures of adolescent cognition such measurement problems may have introduced some variability into these results furthermore the social context around drinking is fundamentally different in the us and gb with substantial contextual differences in heavy drinking such results do not generally equate to uniquely higher disease rates in gb over the us suggesting that further research is needed to examine the extent to which drinkingrelated poor health outcomes are related to divergent drinking practices rather than to intake per se noncognitive skills have a substantial impact on educational attainment later life success and are likely to impact health we could not incorporate analyses in a comparable manner between cohorts sensitivity analyses incorporating such measures in noncomparable ways resulted in similar estimates for the impact of education on health behaviors with the following exception accounting for personality increased the effect of education on smoking and physical inactivity though not drinking for example accounting for adolescent behavioral traits and personality increased in the impact of education on smoking in the gb 1958 cohort finally while our methods provide a robust comparison across multiple datasets we cannot fully assess the independent effects of education outside of the restrictions placed on this sample such limitations may lead to substantively different conclusions if those who were excluded from analysis are qualitatively different from others such divergence may occur if abnormally high or low cognition impacts behavior differently or if adolescent cognition is more influential when formal qualifications are lacking indeed these results differ somewhat from those presented by richards stephens and mishra who find that cognition measured at age 11 is robustly associated with physical exercise at age 53 in the gb 1946 cohort upon adjusting for a range of earlyto midlife measures of socioeconomic status sensitivity analyses incorporating those with mixed qualifications or those at extreme ends of the cognitive distribution do not change results shown divergent results may therefore suggest that cognition may play an increased role among those without formal educational qualifications social inequalities and health it is unlikely that cognition acts alone in predicting social inequalities in health fundamental cause theory provides a useful and practical guide to explaining how education might predict better health in a broad range of outcomes fundamental causes of health are causes that consistently determine who is at risk of risks for instance phelan et al argue that when prevention is as important to disease avoidance individuals will use all of their resources to avoid disease further highlighting that resources are unevenly distributed supporting prior work our analyses do not find that individuals use cognitive capabilities as a fungible resource towards improving health instead our results showed that within educational groupings adolescent cognition was generally not associated with poor health behaviors this leads us to conclude that education is integral in promoting good health behaviors and reducing the risk of poor health behaviors in a way that is not dependent on cognitive capital link et al highlighted a gap in the literature examining the association between adolescent cognition in conjunction with educational attainment on health behaviors we help to fill this gap and found that adolescent cognition is a strong predictor of the propensity for educational attainment along with sex and parental social class however we further note that adolescent cognition was not robustly associated with health behaviors after adjusting for educational attainment future analyses should work to broaden these results to incorporate research into the impact of concentrated poverty and segregation which both lead to reduced capacity in early life lower educational attainment and increased mortality marmot and kivimäki provide three reasons that cognition may be related to health causation selection and indication in these analyses we used health behaviors and sensitivity analyses to reduce the likelihood that indication was at play and have instead focused analysis on examining the selective and causal hypotheses we used data adequate to the task and methodology that explicitly allows for the joint examination of these associations we found support for the view that adolescent cognition predicted the propensity for educational attainment and for the view that educational attainment robustly influenced health behaviors supporting a selective interpretation of the role of adolescent cognition in determining health behaviors however our results showed no support for a causal interpretation of adolescent cognition in relation to health behaviors further research is needed that examines whether other factors including perhaps earlylife developmental factors are associated with both improved health and higher cognition in adolescence health behaviors alcohol intake is the thirdhighest riskfactor for premature death worldwide largely because of its influence on accidental and intentional injury results suggest that higher educational attainment and adolescent cognition had no consistent beneficial effect on the likelihood of heavy drinking though cognition appears to have a small negative effect in one cohort and education a beneficial effect in another heightened use is undoubtedly associated with increased access to money to buy recreational goods however taking cocaine use as one example higher adolescent cognition has emerged as a robust predictor of elevated use even as protective educational gradients have emerged future analyses are needed that examine when and where alcohol intake is susceptible to educational inequalities while explaining where it is not our results may provide preliminary evidence that contextual factors including both time and place influence the specific types of behaviors in which people engaged and the role of educational attainment in influencing them specifically there was a substantial decrease over time in the number of respondents who smoked and who were physically inactive however there was an increase over time in the number of people who drank coincident to these changes the influence of educational attainment on smoking generally decreased over time the number of respondents reporting regular alcohol intake was much higher in great britain over the us educational attainment was more influential on individual physical activity in the us contextual factors are often believed to influence the number of people who engage these results suggest that contextual factors also influence the extent to which socioeconomic inequalities influence health behaviors population health is shaped through the creative use of social economic and educational policies that influence health and wellbeing modification of health behaviors provide the backbone of the us governments healthy people 2020 policy the american heart associations guidelines to improve cardiovascular health and the american cancer societys guidelines for cancer prevention as we increase in our ability to prevent disease and improve health it is likely that social inequalities will similarly increase causal attribution of changing inequalities is of primary importance for identifying the best approaches to reduce poor health behaviors while attacking social inequalities our results support prior research suggesting that education plays a fundamental role in the unequal distribution of health behaviors samplespecific likelihood of smoking drinking and physical inactivity us 1939 gb 1946 and gb 1958 histogram of the density of adolescent cognition scores for those with a university degree in comparison to those with secondary qualifications source pooled data from us 1939 gb 1946 and gb 1958 average association between adolescent cognition and the probability of a smoking b heavy drinking and c physical inactivity by educational attainment with overlap in adolescent cognition marked with vertical dotted lines the percentage of respondents with sequential qualifications us 1939 gb 1946 and gb 1958 t indicates that this number is derived from external analysis of sampling structure rather than from available data counterfactual graphical comparisons linking educational selection and educational causation table 2 beta coefficients estimated using logistic regression showing the association between smoking at midlife and both education and adolescent cognition

educational attainment is a fundamental cause of social inequalities in health because it influences the distribution of resources including money knowledge power prestige and beneficial social connections that can be used in situ to influence health however recent studies have highlighted earlylife cognition as commonly indicating the propensity for education and determining health and mortality a primary causal mechanism through which education and adolescent cognition plausibly impact health is through the modification of health behaviors we integrate analyses using the wisconsin longitudinal study the national survey of health and development and the national childhood development study to examine the role of adolescent cognition and education on smoking heavy drinking and physical inactivity at midlife results suggest that adolescent cognition is associated with the propensity for education but that associations between cognition and health behaviors are attenuated by adjusting for education in contrast education was robustly associated with poor health behaviors these results support the view that education is robustly associated with health behaviors

promising methods to reduce these disparities although the initial focus of crc screening activities was to identify the benefits and then the preferable test for crc screening lately increasing efforts are focusing on reducing disparities in crc screening a reduction of disparities will be necessary to reach crc screening goals set by the united states center for disease control and prevention and the canadian partnership against cancer 45 colorectal cancer screening tests the most commonly used crc screening tests include guaiacbased fobts fecal immunochemical tests flexible sigmoidoscopy and colonoscopy additional most promising screening tests include computed tomographic colonography and fecal dna testing crc screening using the gfobt has been found to reduce mortality in several randomized controlled trials 6 7 8 9 10 in 2008 a metaanalysis that included four rcts found that biennial gfobt screening was associated with a 15 reduction in the relative risk of crc mortality 11 long term followup of one of these rcts suggests that the effect of gfobt screening on crc mortality persists even 30 years after initial screening 12 since fit requires only 1 day sample and no diet restriction the acceptance among the public is much higher for fit than for gfobt 1314 although several rcts have also reported that screening with fs can lead to a reduction in crc mortality 15 16 17 18 the use of fs in canada and the us continues to decline 1920 though there is strong indirect evidence for the effectiveness of colonoscopy for crc screening 21 rcts of colonoscopy use for screening have been initiated recently 22 despite the fact that colonoscopy has become the preferred test for crc screening in the us 23 it is not an ideal crc screening test as it is resource intensive requires highly trained personnel is somewhat invasive and incurs an increased risk of rare serious harms such as bowel perforation hemorrhage and death 24 fecal dna testing is a very promising test and may eventually replace both fit and colonoscopy 25 a recent large multicenter study reported that the fecal dna test detected 923 of crcs detected on colonoscopy which was much more than the 738 detected by fit 26 based on this study result fecal dna testing has been approved by the food and drug administration in the us and is now available for usual clinical use at the mayo clinic however there are no trial data to guide frequency of fecal dna testing which is also currently much more expensive than other stool tests ct colonography is more sensitive than barium enema for detecting crc and its precursor lesions 27 and has almost replaced the use of barium enemas in the north america becoming the preferred test for those with incomplete colonoscopy 28 however although ct colonography can detect 90 of polyps and cancers larger than 10 mm in diameter 29 its costeffectiveness as the initial test for crc screening is highly dependent upon the threshold of lesion size used for referral for colonoscopy and it can lead to invasive tests to investigate incidental benign findings 28 moreover there are no nonmodeling studies demonstrating effectiveness of ct colonography in reducing crc incidence or mortality several canadian and us guidelines recommend that most individuals between the ages of 50 and 74 should have crc screening for example in 2001 the national committee of health canada recommended screening for crc using a fecal test every 2 years for individuals 50 years of age and older 3031 a recommendation which has led to the implementation population based crc screening programs in most canadian provinces the canadian association of gastroenterology currently recommends that average risk individuals over 50 years of age be screened with a fobt every 2 years fs every 10 years or colonoscopy every 10 years 30 there are similar recommendations from the united states preventive services task force and the united states multisociety task force on crc which recommend the use of a fit or a highsensitive fobt annually or biennially fs every 5 years or colonoscopy every 10 years for screening for crc 3233 updated guidelines from uspstf and equivalent canadian task force on preventive health care are expected in 2015 inequities in colorectal cancer screening despite these recommendations and clinical practice guidelines which are based on high quality evidence of the benefits of crc screening many individuals remain unscreened estimates from 2011 suggest that the percentage of individuals in canada that were uptodate with crc screening was 43 34 in the us crc screening rates are some of the highest in the world but it is estimated that only 596 of individuals in 2010 in the us were uptodate for crc screening 35 therefore although crc screening rates are improving in north america participation rates are still considerably lower than those for other types of cancer 36 several studies have explored crc screening participation rates for different subgroups of the population to better understand barriers to access and utilization of crc screening inequities in crc screening use arise from variety of individual provider and health care systemrelated barriers 37 38 39 individuallevel barriers to crc screening are often related to socioeconomic status inequalities in cancer screening participation by income level have been shown in several studies in countries both with and without universal health care insurance 35 40 41 42 43 information from the 2008 canadian community health survey showed that crc screening rates were lower for individuals from lowerincome households than in those from higherincome households 44 individuals with lower incomes may experience a higher frequency of stressful events have fewer social or economic resources available to help cope with stress or have less time available to practice preventive health behaviors such as screening 45 46 47 screening rates also differ across cultural and ethnic groups in a review of the literature on the equity of participation in crc screening among different ethnic populations javanparast et al found that sociocultural factors and cultural expectations play an important role in the acceptability accessibility and utilization of screening 38 common barriers cited include a lack of knowledge about crc and the importance of screening the belief that screening is not required in the absence of symptoms concerns about embarrassment discomfort or test preparation fear about the results and a distrust of doctors 48 49 50 51 52 53 54 55 56 studies have also found that immigrants particularly those with shorter residency in north america are less likely to participate in preventive cancer screening 57 58 59 uptodate crc screening among recent immigrants to canada is 192 compared with 35 for longer term immigrants and 317 for canadianborn individuals 44 not knowing where to go for screening is particularly common among recent immigrants 60 in addition many recent immigrants do not speak english as their primary language and face an additional barrier in communicating with health care providers 61 62 63 64 liss and baker used the data from the 2010 behavioral risk factor surveillance system data to examine crc screening by race and ethnicity in the us 35 this study provides the most complete and updated analysis of racialethnic disparities in crc screening and the degree to which disparities are explained by ses and access to care overall large racial and ethnic disparities in crc screening were found including substantial differences between englishspeaking and spanishspeaking hispanics these disparities were only partially explained by ses and access to care and suggest that even if financial barriers are removed disparities for spanishspeaking hispanics and asians will persist unless interventions are tailored to these groups colorectal cancer screening among indigenous peoples is particularly important since they now have a higher burden of crc and increasing crc mortality strikingly in contrast to decreasing crc mortality among other groups in north america 65 for example the agestandardized crc incidence rate in manitoba canada increased from 296100000 in 19841988 to 790100000 in 20042008 for fn individuals but decreased from 684100000 in 19841988 to 668100000 in 20042008 for all other manitobans 66 unfortunately crc screening rates have been consistently lower for indigenous peoples compared with other ethnic groups 6768 this has also been observed outside of north america in australia 17 of individuals who identified themselves as indigenous accepted an offer of fobt use compared with 386 of nonindigenous people 69 research on the influence of area of residence on screening participation is mixed some studies have found that individuals who live a rural area are less likely to be screened than individuals who live in an urban area while other studies have found no difference in crc screening participation by geography 3844 variation across studies may be due to diverse data sources and different definitions of rural and urban since crc screening often requires a physicians referral in the us barriers to screening may be actually due to disparities in access to a primary health care provider in canada with universal health care and populationbased crc screening programs crc screening rates are only slightly lower in very remote and remote areas compared to urban areas 44 at the provider level a doctors recommendation is the most consistent predictor of cancer screening behavior 55 70 71 72 having a regular health care provider good continuity of care and good communication with a health care provider all improve cancer screening participation 55 73 74 75 a study by seeff et al in the us found that frequent physician visits in the past year was the strongest predictor of crc screening and not receiving a physician recommendation was the most frequently stated barrier to screening 72 older patient age and a shorter length of time as a resident in the us have been found to be inversely related to a physicians recommendation for crc screening 55 a canadian survey from 2012 found that only 32 of canadians reported that their physician initiated a conversation about crc screening 76 screened for crc if their health care provider was in practice for 10 years female practiced internal medicine or had a larger patient population that required crc screening 77 research that has examined health care provider barriers to cervical cancer screening has found similar results 78 health care system barriers include no health insurance or inadequate insurance coverage no programs to recruit patients for screening and inadequate monitoring for compliance with screening guidelines 79 a lack of health insurance is strongly associated with reduced crc screening in many studies 75 however a few studies have found that the provision of universal health insurance or insurance reimbursement alone did not reduce inequity in screening uptake 8081 interventions and strategies to reduce screening inequity a variety of interventions and strategies aimed at decreasing inequities in crc screening have been implemented and evaluated 82 at the individual level these include client invitations and reminders targeted and tailored interventions small media and mass media campaigns client reminders include letters or post cards that inform individuals about the need for screening they can be delivered by mail telephone email or text message baron et al reviewed seven studies that examined effectiveness of client reminders for crc screening using the gfobt 82 overall the median increase in participation was 115 they concluded that there is strong evidence for the use of client reminders for fobts although information was limited for fs and colonoscopy targeted or tailored reminders can be printed or verbal and address an individuals risk profile or other relevant barriers to screening results are mixed some rcts that used sociopsychologically tailored crc screening interventions found an increase in participation 83 84 85 while others did not 86 87 88 most of these rcts used selfreported screening participation rates which may have biased the results 88 in 2014 jerant et al undertook a rct that compared the crc participation rate after receiving a tailored interactive multimedia computer program to a nontailored program among a multiethnic population 88 the crc participation rate was confirmed using electronic and paper medical records although the tailored message increased screening knowledge selfefficacy and readiness for screening there was no difference in screening uptake between the groups small media include education materials that inform individuals about screening and motivate them to seek more information talk to their health care provider or make an appointment for screening 4 the task force on community preventive services recommends the use of small media for crc screening using fobt based on the results of several studies that found a median increase in participation of 127 82 mass media such as television radio newspapers magazines and billboards are used to communicate educational and motivational information about screening to a community mass media is often used in conjunction with other strategies and has been shown to effectively promote child safety seat use physical activity and adolescent tobacco use 82 however there is currently insufficient evidence to determine the utility of mass media for increasing fobt fs or colonoscopy use for crc screening participation as it is often combined with other strategies 82 it has also been suggested that newer media forms such as mobile technology internet interfaces and social media can improve screening participation but additional research is needed to demonstrate their effectiveness 89 at the provider level strategies include office system interventions such as flags to remind physicians to recommend screening indepth patient education or navigation and physician incentives using a cluster randomized trial design in two canadian provinces grunfeld et al evaluated the effectiveness of a multifaceted evidencebased tailored practicelevel intervention with a practice facilitator designed to improve chronic disease prevention and cancer screening 90 each pf supported two primary care team practices and conducted a 1h visit with each patient crc screening increased by 101 in the pf group and was found to be cost effective this model supports the integration of an allied health professional specifically trained in chronic disease prevention and screening into the primary health care team navigators have been used in several rcts that use colonoscopy for crc screening with positive results 91 92 93 94 95 matching the navigators linguistic capacities and cultural understanding with the population being served appears to be a key part of successful navigation 96 since cost constraints in primary practice may influence the feasibility of implementing providerlevel strategies in 2006 manitoba health implemented a physician integrated network 97 the pin uses quality based incentive funding as one of the key mechanisms for engaging physicians to meet primary care quality indicators which include crc screening as of 2011 there were 12 feeforservice family practice clinics a peer reviewed journal in the field of carcinogenesis and carcinoprevention journal of carcinogenesis 20141312 participating in pin representing a mix of urban and rural settings with practice sizes ranging from 5 to 25 physicians the percentage of patients in these practices who had a gfobt in the past 2 years or a colonoscopy in the past 10 years increased from 255 in 2008 to 642 in 2011 98 however this network has focused on a limited number of prevention activities in each practice setting and it remains unclear if the benefits seen will be maintained with multiple prevention and screening activities there is also evidence that increasing the supply of health care providers who can conduct fs and colonoscopy can also improve crc screening 99 although many of these individual and providerlevel interventions are successful their impact remains small and often does not include those groups of individuals who experience the greatest barriers to screening 100101 therefore to achieve large sustainable effects a system or multilevel approach has been suggested to be necessary to reach a wider population 82 102 103 104 105 populationbased organized approaches to crc screening can increase crc screening rates and are expected to reduce ses disparities in screening participation 5982 although the us does not have a national crc screening program several organized approaches to crc screening have been introduced in recent years the department of veterans affairs and kaiser permanente northern california have both found that an organized approach to crc screening can lead to participation rates of over 75 59106 kpnc uses an electronic medical record to identify unscreened individuals and then sends them a fit kit by mail individuals receive additional telephone calls and reminders as required kpnc also uses chart reminders to prompt the offering of a screening test during primary care or specialist visits with orders to allow nonphysician clinical staff members to provide a fit when indicated the cdc created the colorectal cancer control program in 2009 which funds 25 states and four tribal organizations to promote and increase populationwide crc screening with a focus on low income and underserved populations 4 the crccp requires that its partners use the evidencebased strategies recommended by the task force on community preventive services 103 in 2002 the state of delaware implemented a comprehensive populationbased crc screening program that included coverage for screening and treatment patient navigation for screening and care coordination and case management 107 from 2001 to 2009 the percentage of black residents who had ever had a colonoscopy increased from 478 to 735 while the percentage of white residents increased from 589 to 747 effectively eliminating racial inequity in cancer screening importantly during the same time period the crc incidence rate decreased by 34 and 26 for black and white residents respectively in response to low colonoscopy screening rates and significant ses disparities in screening in new york city the nyc department of health and mental hygiene implemented a similar program in 2003 108 the dohmh established a coalition of stakeholders promoted colonoscopy through several health marketing campaigns for the public and the medical community expanded the public hospital systems endoscopy capacity and encouraged provider referral using a oneonone pharmaceutical detail model the media campaign focused on poor neighborhoods and populations with low screening rates a direct endoscopy referral system and an inhospital patient navigation program were developed to ensure that referred individuals were successfully screened from 2003 to 2007 the percentage of individuals who had a colonoscopy increased from 417 to 617 the racial ethnic and sex disparities in screening observed in 2003 were eliminated although asians the uninsured and individuals with lower levels of education and income were still less likely to be screened most recently in the us the affordable care act mandates that medicaid and insurance plans cover all preventive services recommended by the uspstf in full with no patient costs 109 this includes crc screening using an fobt fs or colonoscopy unfortunately the aca does not include followup colonoscopies after a positive fobt or fs despite the fact that the provision of followup testing is one of the criteria necessary for effective screening as identified by wilson and junger for the world health organization in 1968 110111 therefore there is concern that aca may increase disparities in crc screening by deterring individuals from performing a fobt or fs if they cannot pay for the followup tests or necessary treatment 109 as of 2010 all canadian provinces had announced or had started to implement organized crc screening programs using an fobt or fit for individuals 5074 years of age with colonoscopy followup for positive screening results 76112 eleven quality indicators that range from participation rate to crc cancer detection rate were developed nationally to measure the ongoing performance of the provincial screening programs 112 from 2009 to 2011 between 5 and 374 of individuals to whom a program was available had completed a fobt or fit 5 information is not yet available about whether or not the canadian provincial programs have reduced inequities in screening participation a peer reviewed journal in the field of carcinogenesis and carcinoprevention journal of carcinogenesis 20141312 conclusions screening for crc and its precursors is highly effective in reducing deaths due to crc however it is clear that there is inequitable crc screening between different groups in both canada and the us there is an urgent need for health care system interventions and health policies to help reduce disparities in crc screening although evidence suggests that clientdirected interventions are effective populationwide screening is also required to minimize the barriers experienced by individuals that have lower levels of screening ethnic minorities and indigenous individuals new immigrants lowincome populations individuals with lower levels of education and some rural or remote populations success has been demonstrated by several pilot programs in the us most of the systemwide strategies recognize the importance of developing partnerships with community organizations to ensure that screening information and strategies are culturally appropriate and relevant partnerships are necessary to help screen individuals who are considered hardtoreach and have never been screened this is particularly important since largest impact from crc screening is accrued from the first screen overall to address disparities achieve high crc participation rates and reduce the burden of crc in the population strategies at all levels are required

colorectal cancer crc is the third most commonly diagnosed cancer and the second most common cause of cancer related deaths in canada and the united states us 12 in 2014 an estimated 24400 canadians and 136830 americans will be diagnosed with crc and 9300 canadians and 50310 americans will die from the disease 12 most crcs are believed to develop from precursor polyps over a period of at least 10 years 3 therefore crc is ideally suited for screening which can detect and remove crc precursor lesions and early stage crc detection of crcs

introduction on august 21 2017 i sat with several dozen wildland firefighters in a dusty briefing room it was just after 8 am and we had gathered for our morning briefing on a very unusual day two men sitting at the front of the room led us through days forecast for the hot and dry day along with measures of atmospheric stability and fire risk locally regionally and nationally wildfire response was at a preparedness level 5 indicating that fire danger remained high and virtually all available resources such as fire crews and engines were already assigned to fires the daily safety discussion was about the risk management process and after a crew member read from a printed handout one of the assistant fire management officers for cascade national forest matthew asked the attendees how can we apply that to today 1 a firefighter joked dont stare at the sun today was the solar eclipse as the briefing continued about two hours before the moon would completely black out the sun people described the conditions already on the ground karen an engine captain said that traffic was backed up on the freeway for miles with lines of cars pulled over on the side of the road matthew told us to expect some craziness he continued theyve talked about impending doom right happening for a while we were all scheduled to work until 8 pm but we should prepare for the worst and be ready for a late night if needed this day was both typical and atypical of the three fire seasons i spent working with firefighters and fire managers on the cascade national forest in the pacific northwest it was the height of fire season during a busy summer nationally over 18000 firefighters were working on 89 large wildfires including over 300000 acres of wildfires in the northwest several months into an active fire season firefighters were generally tired but not as exhausted as they would be a month later at the end of the season yet the energy of the morning was palpable as our fire crews and nearly everyone in this part of the state geared up for the total solar eclipse the first total eclipse to hit the continental united states since 1979 in many ways the 2017 fire season crescendoed not toward the peak of fire season but toward eclipse day jokingly called the eclipsepocolypse by the firefighters with whom i worked the timing of a total solar eclipse during wildland fire season offers an unusual case study for exploring how disaster managers prepare for multiple or simultaneous hazards the likelihood and severity of simultaneous disasters is increasing yet there is little research on what preparation for multiple hazards or disaster events looks like on the ground given the significant uncertainty involved in developing and implementing disaster plans research is needed to identify how multiple types of knowledge and uncertainty are considered in disaster management and how frontline workers interact with disaster management plans in this paper i draw on my ethnographic research working as a wildland firefighter on the cascade national forest to examine how disaster managers and frontline workersin this case fire managers and federal agency officials and ontheground firefightersprepared for and thought about the convergence of two hazards on this national forest and surrounding areas in august of 2017 the height of a severe wildfire season and hundreds of thousands of anticipated visitors for the total solar eclipse i ask two related research questions how do disaster managers develop plans for multiple hazards that involve different forms of knowledge and uncertainty and how do frontline workers respond to and implement those plans merging organizational scholarship on streetlevel bureaucracy with theories of uncertainty from the sociology of science i examine how firefighters as frontline responders contend with uncertainty related to the likelihoods or hazards associated with disaster events i draw on ethnographic observations and interviews with firefighters and disaster managers to identify how local and federal agencies developed and implemented their plans for the 2017 eclipse how those plans overlapped and interfered with preparations for the wildfire season and how those plans were received challenged and implemented on the ground this research identifies unexpected commonalities in disaster preparations across these two types of hazards and demonstrates the importance of considering forms of knowledge and uncertainty in evaluating disaster preparation particularly in an era of growing skepticism of public health interventions and intensifying global vulnerability to simultaneous hazards and disasters disaster management risk and the frontline responder this paper focuses on disaster preparation for a severe wildfire season and a total solar eclipse in august 2017 while there is a vibrant interdisciplinary field of hazards and disasters research the subfield of sociology of disasters has been relatively small and removed from mainstream sociology a shift from the fields focus on natural hazards to the social construction of disaster impacts has allowed for greater attention to longterm multiscalar social processes and to issues of power and inequality vulnerability and resilience and organizational structure and culture sociological attention to disasters and their impacts is particularly important as climate change increases the frequency and severity of events such as wildfires disaster management disasters are generally defined as nonroutine events that occur at specific points in time involve significant harm to people andor social systems lead to social disruption and inspire a collective social response because the impacts of disaster events are socially constructed and depend on the vulnerability of impacted communities understanding disaster planning and preparedness is necessary for understanding the impacts of disaster events thus critical disaster studies distinguish between geological or climatological hazards such as earthquakes floods or wildfires and the socially constructed impacts of those hazards arguing that natural disasters do not exist disaster preparedness is one stage in the emergency management cycle along with mitigation response and recovery preparedness involves predicting and preventing disasters and developing plans for before during and after disaster events to reduce harmful impacts a key component of preparedness is a multistakeholder planning process to develop common understanding of the hazard knowledge of capabilities and resources and set of protocols for reducing risks rather than using different response frameworks for different types of hazards disaster management increasingly follows an all hazards approach which acknowledges the similar impacts of many seemingly distinct disasters and thus involves consistent and effective response to any disaster or emergency for example all hazard incident management teams are organized and rostered yearround through the national incident management system to respond to all sorts of disasters ranging from wildland fires to terrorist attacks 2 while practitioner writing and scholarly research on disaster preparedness is extensive less is known about preparing and responding to two or more disasters simultaneously at least in part because these events can rarely be anticipated eclipses themselves are not disasters but they are a type of mass gathering event defined as an event with enough people in attendance to strain the planning and response resources of the community state or nation hosting the event 3 eclipses pose potential hazards because the significant number of visitors traveling to see a total solar eclipse has the potential to cause negative impacts and localized social disruption overwhelm available resources and inspire a social response thus an eclipse provides a valuable case study for exploring preparation for multiple hazards since its timing and potential to overlap with other hazard events can be anticipated by disaster managers research on multiple disasters that occur in the same place within a defined but longer time period cascading disasters in which one triggers the other or natech or techna disasters involving the interplay of natural hazards and technological systems highlights particular social economic and health consequences of experiencing multiple disaster events studying preparedness and planning activities for anticipated events expected to cause significant social disruption such as a solar eclipse addresses some of the methodological challenges facing disaster research since the onset of most disasters can rarely be anticipated this is particularly the case for shortfuse hazards which occur quickly with little warning scholars have developed analytical and computational models for multiple hazard preparation and response for example modeling prepositioning and operational allocation of resources to multiple wildfires or the most effective allocation of resources across multiple cities to simultaneous disasters however analytical models provide incomplete information about how disaster managers and frontline responders will actually act during these types of incidents as scholars note decision makers may lack analytical training and rely on experience and simple heuristics instead of formal models leading them to nonoptimal decisions similarly research on organizational response treats humanness as a limitation or an obstacle the concept of streetlevel bureaucracy offers a useful approach for understanding and interpreting the humanness of frontline responders streetlevel bureaucrats are public service workers who interact directly with the public and have significant discretion in how they do their work 4 while this theory has been widely used to study the work of those in social service medical and law enforcement fields its relevance for disaster responders has been underexplored frontline workers actually implement disaster plans and interact with the public before during and after events and thus the aggregated behavior of individual actors at the front lines of emergency response in essence becomes the response of organizations to critical incidents understanding how streetlevel bureaucrats do their work requires not only attention to public interaction and discretion but also an accounting of how frontline workers respond to different types of knowledge and uncertainty that is how frontline workers interpretations and evaluations of the knowledge underpinning the policies they are charged with implementing will influence the discretion with which they act and the ways in which they interact with the public additionally the routine and standardization that defines much of streetlevel bureaucrats work is challenged by unknowns and uncertainties which are inherently incompatible with routinization research has shown that uncertainty related to rules and policies impacts how frontline workers interpret and perform their jobs however for frontline responders an additional important area of knowledge and uncertainty relates to the definition and understanding of the disaster risk itself this type of knowledge may be especially relevant in disaster response situations since identifying something as a disaster or emergency is organizationally and situationally developed little is known about how frontline workers or other stakeholders including skeptical publics mobilize resistance against risk management policies qualitative and observational research can provide useful information about how plans are developed implemented and questioned by decision makers and disaster workers in realtime situations uncertainty and risk in disaster management disaster preparedness aims to reduce the risks from disaster events to impacted populations disaster risk can be conceived of as involving four components hazard likelihood or exposure the vulnerability of those impacted and some evaluation of uncertainties disaster risks are socially determined rather than being solely determined by the physical geological or climatic hazard meaning that the impacts depend greatly on the vulnerability of potentially impacted populations and how social institutions organize themselves ahead of during and after the disaster uncertainty is inherent in the concept of risk both because risks refer to future unrealized threats which can only be partially predicted and because the scope and scale of hazards and likelihoods is never fully known sociologists have long demonstrated that organizational form and culture can both directly contribute to catastrophic events and to inaccurate or incomplete assessments of risk for example vaughan found that mistakes related to the challenger space shuttle explosion were socially organized and systematically produced by an organizational culture that normalized deviance from safety requirements uncertainties related to disaster events create challenges for disaster preparedness extremely rare or unprecedented black swan events evade accurate risk characterization because they have never been encountered before and in principle cannot be anticipated as cerulo notes stakeholders frequently claim that severe disasters could not be anticipated yet disaster management is devoted to the prediction and management of hazards and their impacts the anticipation of worstcase scenarios lends itself to what clarke terms possibilistic thinking where even lowprobability events inspire a collective response however more information does not inevitably lead to more complete risk characterization as gross notes ignorance and knowledge exist in a dynamic and recursive relationship rather knowledge about the limits of knowledge his definition of ignorance increases with every state of new knowledge knowledge about disaster events typically involves estimation and interpretation and thus depends on individual and collective social factors because knowledge about disasters is socially produced relevant uncertainties are not merely derived from the absence of information but also include gaps due to historical knowledge and data collection reliance on particular instruments heuristics or theories and the use and measurement of particular interventions in disaster management uncertainty is not simply the absence of information but rather involves a complex interplay of multiple forms of knowledge and ignorance when emergency managers and institutions plan and prepare for disaster events they are confronted with different forms and levels of knowledge related to the hazards associated with the disaster and the likelihood it will occur in a specific place and time 5 known knowns are areas of knowledge involving a clear accepted understanding of hazard or likelihood referencing a source of knowledge deemed sufficient by the group in question and include clearly understood hazards and precisely predicable occurrences of disaster events 6 the source of this knowledge may be expertderived disaster managers know when and where an eclipse will occur based on calculations and interpretations from astronomers physicists and geographers the source of knowledge may also be experiential firefighters know that wildfire likelihood increases under certain conditions based on their accumulated individual and collective experience known unknowns involve a clear accepted understanding about what is not known while taking it into account for future planning in the case of known unknowns a disasters hazards or likelihoods are estimated or extrapolated from prior events places or other sources of data and the assumptions and limitations of these estimation practices are acknowledged and considered in evaluating the hazards and likelihoods a type of known unknown called extended knowledge involves explicitly taking nonknowledge into account in planning or research processes finally unknown unknowns refer to a complete lack of knowledge no prior data or experience allows for the accurate estimation or prediction of hazards or likelihoods putting disaster managers into potential situations of total surprise black swan events would fall into the unknown unknown category because by definition they cannot be anticipated with present knowledge focusing on preparedness for two anticipated events allows for an examination of how emergency managers plan for multiple hazards identifying and considering the different types of uncertainty with which those managers are faced and how those plans are evaluated and implemented on the ground in the case of wildfires in central oregon in late august fire managers have a reasonable expectation that wildfires will happen somewhere in the region sometime in august but they do not know the specifics of when where or what will take place thus managers have a relative degree of certainty related to the hazard but do not know the exact likelihood in contrast an eclipse is an unusual type of event because disaster managers know exactly when and where the eclipse disaster will take place but they do not know exactly what the social and environmental impacts will be they know the likelihood with a high degree of certainty but have less certain information about the hazard preparations for these simultaneous events involve balancing one against the other for example improved preparation for the eclipse could mean limiting initial attack operations on new wildfires so that more resources are available to help with eclipse response but this would increase the risks of local and regional wildfires growing beyond the initial attack phase and requiring a more significant mobilization eclipses and wildfires following the all hazards approach to emergency management described above the 2017 eclipse was treated as a potential catastrophic event by local emergency managers as mentioned above eclipses can be thought of as mass gathering events mass gathering events include major sporting events entertainment activities or religious or cultural activities the timing and location of most mass gathering events is typically known well ahead of time and thus impacted communities and stakeholders can develop preparedness and response plans 7 research and planning related to mass gathering events typically focuses on preventing minimizing and responding to public health emergencies by providing medical services and responding to public health incidents such as communicable disease outbreaks i found no research in the social science or disasters literatures on eclipse preparations despite their significant impacts on property infrastructure health and injury and loss of life the social aspects of wildfires have received less scholarly attention than hazards such as earthquakes and hurricanes however a growing body of social science research on wildfires has focused on issues including community wildfire preparedness manager interactions with local communities public perception and support of wildfire policies and prescribed fire public response during fires and recovery among other topics in recent years wildland fires in the united states have grown in total number of acres burned and in measures of destructiveness anthropogenic global climate change contributes to higher temperatures record droughts stronger winds and reduced snow packs leading to drier fuels less water available for suppression and a longer wildfire season additionally risks to people have increased as more people live in the wildlandurban interface places where developed settlements abut or are intermixed with forest or brush lands in the united states over 120 million people live on 220 million acres of wui agencies and managers prepare for wildfire season and specific events using many strategies and procedures including training and resource development anticipating resource shortages and prepositioning resources and people immediately preceding and during an event they can also use regulatory interventions and enforcement tactics to reduce risks from expected events the case wildland fire management in central oregon this paper draws on ethnographic research conducted with the wildland fire management organization of cascade national forest in central oregon 8 the general area of cascade national forest includes several small cities numerous small towns extensive outdoor recreation opportunities and agricultural and timber communities wildfire operations on land managed by the us forest service and bureau of land management are managed collaboratively through an interagency fire management service also located in the region are nationallevel wildfire resources that can be dispatched to nonlocal fires including smokejumpers rappellers and hotshot crews 9 the ifms district in which i worked staffed two handcrews and roughly six engines every day during the summer with fulltime firefighters who were a mix of seasonal and yearround employees 10 firefighters worked a minimum of 40 h a week and overtime was common and expected during periods of high fire risk 11 risk management policies and plans are developed at high levels within agency bureaucracies while the implementation of those plans falls to ontheground individuals much lower in organizational hierarchies the fire management hierarchy in the ifms with which i worked is summarized in fig 2 12 officebased leadership develop the plans and procedures and spend their days largely in the office high ranking agency administrators including forest superintendents or district rangers do not necessarily have experience as wildland firefighters though they would have some training in fire organization and operations the office overhead who come from a firefighting background typically spend little time at this point in their careers working bootsonthe ground in firefighting roles though most are members of ahimts and are dispatched to large fires several times per season in leadership roles the fire operations staff on the other hand are based in the field field overhead fire operations leadership with decades of experience go into the field on a regular basis though they are rarely swinging tools themselves field operationscrew members squad bosses and captainsare in the field every day engaged in physical labor as firefighters central oregon is an ideal location for investigating wildland fire management cascade county ranges from developed agricultural land and high desert areas to mature pine forests at the base of 9000ft mountains the cascade national forest includes land in multiple predominantly rural counties the region experiences significant and varied fire activity each year in a typical summer the area will see several hundred wildfire starts the vast majority of which are fully suppressed during initial attack the first efforts to put a fire out the day or day after it is reported the region also has a history of large fires that have destroyed homes and forced evacuations in and around the areas population centers in addition to an interesting fire regime central oregon is an ideal location for studying wildfire risk management because of the variety of communities and residents living in close proximity to federal and state forest land some areas are populated with affluent amenity seekers living in central oregon for close access to recreational opportunities in the mountains and cultural resources related to a vibrant brewery and cultural scene in and around the largest city of forestville however many areas of central oregon are lowincome and decidedly rural examples of all four types of wui communities identified by paviglio and colleagues can be found in central oregon this diversity suggests that forest and fire management decisions forms of community involvement and types and levels of community resources will vary significantly across the region solar eclipse total solar eclipses occur when the moon travels directly in front of the sun during the day the sun is 400 times wider than the moon but the sun can be blocked completely because the moon is 400 times closer to the earth prior to the 2017 eclipse the last total solar eclipse in the contiguous united states was in 1979 and the next will occur in 2023 parts of central oregon were within the path of totality the area where the sun is completely blocked by the moon allowing for several minutes of surreal darkness the state of oregon predicted that as many as 1 million people could travel to oregon for the eclipse and central oregon alone was told to expect 200000 visitors more than the total population of the region given the regions typical weather and low levels of light pollution central oregon was identified as one the best places for viewing nasa observed the eclipse in madras oregon two and a half hours southwest of portland a modernday neohippy festival held at a large ranch east of the 10000person town of prineville oregon hosted more than 30000 ticketbuying attendees leading to a 14mile traffic jam the day before the eclipse methods i conducted participant observation with fire managers and firefighters in the cascade national forest for three fire seasons i completed the initial training program required of new wildland firefighters along with required annual physical fitness tests and refresher trainings and am red carded as a firefighter type 2 the lowest level of certified wildland firefighter for these three fire seasons i worked as a wildland firefighter on handcrews and engines shadowed various fire personnel on local fires and prevention activities took additional training courses and traveled with an ahimt on regional fire assignments additionally i observed and gathered material from various community meetings and events related to wildfires and conducted semistructured qualitative interviews with firefighters fire managers and other fire experts throughout my ethnographic research i explained my role as a researcher studying the social and political aspects of wildfire risk management and requested permission from individuals and crews to shadow their work and from supervisors to participate in training programs and activities i explained to all individuals with whom i worked that i would only use pseudonyms to protect confidentiality to take fieldnotes i carried a small notepad in the bulky cargo pockets of my firefighting pants and took jottings in the moment including verbatim quotations when possible i typed up detailed fieldnotes as soon as possible after my fieldwork concluded typically that evening or the following day retaining any verbatim quotations from my fieldbased jottings to be as accurate as possible in how i present my data quotations are marked with double quotes when they are verbatim quotations from my field jottings or interview transcripts and single quotes when they are passages taken directly from my typed fieldnotes this paper mainly utilizes data from the 2017 fire season though my analysis is informed by all three years of research from early june to midaugust 2017 i spent 31 field days working as a wildland firefighter on an engine or handcrew with daily field time ranging from 9 to 24 h this included working as a crew member on a wildland fire engine every day the week of the eclipse most of my participant observation research was conducted on a fire district that experienced 99 totality during the solar eclipse so local impacts were somewhat less than parts of the state that experienced 100 totality i also attended training and leadership meetings that included eclipsespecific discussions and planning activities i had countless conversations with people about the eclipse over the course of the summer and documented these in my fieldnotes i also gathered documents related to the eclipse including planning documents distributed at meetings and shared with me by fire managers to supplement my observations and identify specific patterns related to how firefighters thought about the eclipse i conducted focused interviews with 17 firefighters ranging from firstyear crew members to fire managers with over 25 years of experience in these interviews i asked about their expectations for the eclipse and their thoughts on the biggest eclipserelated risks posed to firefighters and the general public the majority of these interviews took place in group settings typically interviewing all members of a single crew these group interviews had both strengths and limitations while interactions between crew members brought out additional ideas and richer elaborations some quieter crew members spoke less than they might have in a oneonone interaction i transcribed interview recordings verbatim three individuals declined to be recorded and so i took detailed notes and typed them up soon after i analyzed fieldnotes and interview transcripts in nvivo 12 a computer program that manages qualitative data following ragin and amarosos interpretive model of research my analysis moved iteratively between my data and theoretically informed analytic frames i began with an initial list of themes and topics derived from my research questions and prior research focused on the process of preparedness and risk perception i revised and added to my coding structure through preliminary reading of fieldnotes and interview transcripts adding codes related to skepticism interactions between levels of authority and changing perception this paper reports on themes and patterns related to the eclipse that emerged from this coding process to supplement my understanding of community and agency preparations for the eclipse particularly public events that occurred outside of my fieldwork window i also read local newspaper and social media coverage of eclipse preparations and response i gathered newspaper articles by searching for eclipse in articles from january through september 2017 in four state regional and local newspapers i also gathered facebook posts from january through september 2017 related to the eclipse from the local usfs office blm office and cascade county emergency management i do not always directly cite relevant news articles or social media posts if doing so would identify people or places in my research findings the 2017 eclipse was seen by all as a unique experience though what was noteworthy for firefighters and fire managers were the potential hazards and chaos associated with the huge influx of visitors not the eclipse itself as jed an engine captain told me i mean for my career im never never gonna have an experience like whats going to happen i guess if their predictions are right early season predictions for the 2017 fire season were not particularly extreme due to a wet winter and aboveaverage snowpack however an unusually hot and dry summer quickly depleted snow reserves and dried the fine grasses that flourished in the wet spring leading to severe fire conditions by august the northwest regions wildfire risk was at a national preparedness level 4 as eight large fires burned in oregon and washington ten days later the national and regional preparedness levels were both at 5 indicating that virtually all available resources in the northwest and nationally were assigned to active fires this wildfire season provided the backdrop for eclipse planning and response preparing for the worst dedicated eclipse preparations by federal state county and local agencies began a full year ahead of time and were in full swing by early 2017 13 a planning spreadsheet for part of the cascade national forest indicating timelines and due dates included two items for summer of 2016 and seven action items for january 2017 their preparations involved extended knowledge from two main sources previous eclipses in other parts of the world and previous large gatherings in the region usfs managers queried their counterparts in other parts of the country and world who had experienced eclipses in the past since central oregon had not experienced a total solar eclipse in over a century they also drew on their experiences with other large influxes of visitors notably rainbow family of loving light festivals that bring tens of thousands of visitors to national forest lands every summer the rainbow gatherings have a troubled relationship with the usfs since organizers refuse to seek the permits required for such a large event concerns related to past rainbow gatherings in oregon and elsewhere include impact to public lands limited access to sanitation facilities and safe drinking water interpersonal violence drug use and infectious disease outbreaks eclipse preparations were grounded in a combination of known knowns known unknowns and unknown unknowns some things were clearly known the date and time of the eclipse and the astronomicallydetermined path of totality other topics blurred the line between certainty and uncertainty the number of visitors where they would be how long they would stay and what their impacts might be local and state emergency managers took as fact that the crowds would be substantial while acknowledging significant uncertainty regarding visitors plans they knew it would be bad they just didnt know how bad it would be this uncertainty was reflected in contemporaneous media coverage a newspaper article in february quoted a forest service public affairs officer laughing at the idea of visiting the region during the eclipse for any other reason if you dont care about the eclipse dont come at that time… everything is booked we already know there will be traffic issues and problems with resources in general early predictions also linked eclipse traffic with wildfire risk as the emergency manager for another central oregon county told a reporter if were going to have a big fire were going to have it that week yet while some aspects of the eclipse were described with relative certaintythe crowds of visitors and the heightened risk of traffic problems and wildfiresforest managers also emphasized uncertainty this is not an event we can get a list of rsvps for said a blm spokesperson preparations throughout the spring were collaborative and multiagency involving office overhead and agency administrators in april of 2017 cascade county convened an eclipse planning group for a daylong interagency simulation of emergencies that could arise on eclipse day including a stranded hiker major car crash a medical incident and a wildfire more than 85 attendees came from a dozen agencies including usfs blm and the oregon department of forestry along with the oregon department of transportation local fire departments and county emergency management departments throughout the spring and early summer planning operations continued within the wildfire operations system regularly scheduled meetings such as the districts weekly fire leadership meeting added the eclipse as a standing agenda item the usfs developed detailed written plans for numerous aspects of the eclipse covering topics ranging from staffing extra wilderness rangers in peak viewing locations to plans for extra portapotties and garbage collection fire managers were actively working to move eclipse hazards from the uncomfortable territory of the unknown unknown to the more familiar space of known unknowns by trying to think of everything i observed the ubiquity of eclipse preparations starting on my first day returning to fieldwork in 2017 at an allday training in late may for incident commanders of type 4 and 5 fires wildfires that are generally small and low in complexity and risk over one hundred people gathered at a county fairground in a highceilinged building filled with rows of folding chairs after a couple of brief welcome messages from agency administrators the training turned to the eclipse two office overheads allen and barry talked about planning for the eclipse and for a smaller gathering of the rainbow family that was expected to take place in july and blend into the eclipse celebrations in august barry said that the eclipse will be big we dont know exactly how big but estimates range from 100000 to 500000 the eclipse would travel across the whole country he explained but according to meteorologists the northwest has the best potential for clear skies barry ran through expected problems around the time of the eclipse major resource shortages no hotel rooms available for out of town firefighters impacts on travel routes and damage to public lands it may be hard to respond and it will be hard for resources to travel to or across the eclipse route allen added there may not be cell service just like if youre in a stadium and you cant get service because it overwhelms the cell towers also there wont be fuel or resupply they had already reserved a local middle school and fairgrounds planning to use the two facilities for wildfire operations and a public information center allen suggested they might move aircraft out of central oregon entirely because airspace would be too busy and firefighters might be diverted to vehicle accidents or search and rescue operations allen and barry highranking office overhead who had been extensively involved in eclipse planning all year highlighted the known unknowns related to the eclipse areas in which they were sure of their ignorance but were nonetheless developing plans allen noted that the eclipse creates lots of work on top of the middle of fire season barry agreed according to the northwest coordinating center which tracks wildfire statistics and resources on average the region has four or five large wildfire incidents in midaugust and three or four emerging incidents allen described the eclipse as an unusual incident because we know when its happening they could pin down the likelihood at a specific point in time the eclipse will take place on august 21 but they had to make their bestinformed predictions about what the hazards would be developing knowledge of those hazards took fire managers in unusual directions on a warm july day i met with mark a district ranger for the cascade national forest he had come to the morning briefing at the fire compound to talk to all the firefighters about the eclipse and i stayed after to talk with him he said they are thinking of everything and doing really highlevel planning someone had calculated that with the additional visitors in the region they could see up to 14 deaths per day twice the typical number which would overwhelm the local morgue somebody thought to look at the space in the morgue he said smiling and shaking his head as another example of the constancy of eclipse preparations i met with stuart another district ranger in his office on the wall behind his desk he had a daybyday countdown to the eclipse along the lines of days till all hell breaks loose he told me i was his break from a long eclipse meeting it feels like all theyre thinking and talking about and he was glad for the change in pace to talk about a recent wildfire known knowns and known unknowns the likelihood of the eclipse was known it would occur in the late morning on august 21st but significant uncertainty surrounded the types and severity of different hazards an official briefing document for nonemergency usfs preparations highlighted numerous potential impacts including traffic shortages of supplies like gasoline overwhelmed communication systems and increased demand for response to nonfire emergencies like traffic accidents and medical incidents in interviews the month before the eclipse firefighters generally emphasized two general hazards from the eclipse driving and public behavior many firefighters mentioned driving as a major risk both to them and to a lesser extent to the public evan a sixthyear firefighter in his thirties connected eclipsespecific risks to the dangers of his job generally driving he said thats our biggest hazard thats how most people get killed on the job is driving others noted that the volume of traffic would delay response to other emergencies including wildfires and could make it difficult for them to do their jobs as nathan a member of the field overhead team with over 20 years of fire experience explained driving is going to be the biggest risk you know getting people to a fire and back home from a fire is the biggest risk were all very good at our jobs weve pounded in the safety thing with hazards and snags all summer long and weve been really good at that its just the driving aspect a lot of crazy people from outside the area not knowing how to drive through roundabouts blowing red lights blowing stop signs people getting lost in the woods i think thats going to be the biggest hazard to the firefighters driving risks are familiar to firefighters in addition to dedicated classes needed before driving any agency vehicle or the training for a commercial drivers license required to operate the heavy engines the dangers of driving are reiterated in multiple ways throughout a firefighters career this includes annual red card refresher recertification trainings and regular mentions in the six minutes for safety covered at the start of every morning briefing firefighters also pointed to risky public behaviors ranging from drug and alcohol use to mob behaviors what they casually referred to as shenanigans or stupid human tricks several firefighters predicted extensive drug use on national forest land and that they would see increased numbers of overdoses and suicides susan a handcrew squad boss said that public interaction could be a risk to firefighters public contact especially for people who are out doing something wrong its kind of like a risky thing for us… were not law enforcement we dont have guns we dont have anything to really like protect us so thats kind of risky nathan echoed this concern especially for fire people who traveled solo such as prevention and fuels technicians theres going to be an influx of crazy people probably hopped up on drugs and marijuana and everything the confrontation that they could have that poses a to me a big risk to our firefighters in interviews few firefighters specifically linked eclipserelated risks to wildfires joey an assistant engine captain said that his biggest concern was firefighters being put in situations they werent prepared or trained for especially firstor secondyear firefighters without any experience other than trees and dirt daniel a firstyear firefighter on an engine and william a squad bosslevel firefighter on the handcrew both named escaped campfires as a major risk yet overall there was little expressed concern that eclipse risks would morph into wildfire risks tempered expectations and changing plans operational plans for what firefighters would do during the eclipse period were developed by individuals in fieldand officebased leadership positions in meetings and in agency offices individuals falling in the field overhead category involved in eclipse planning drew on their own experience working in the field took the pulse of firefighters and developed and revised plans accordingly however people in field operations positions had no direct lines of input into the eclipse planning process no crew members or even captains sat on eclipse planning committees after plans were partly or fully developed they were shared at morning briefings at the fire district compound which were attended by field overhead firefighters and visitors such as agency administrators or firefighters from forestville fire or other nearby agencies in early august at one of these meetings we sat in the fire compounds dusty briefing room field overhead who had been involved in eclipse preparations shared preliminary plans for the eclipse incident action plan a document that would guide operations for the week of the eclipse phil an afmo said everyone would likely be on 12hour shifts 0800 to 2000 the week leading up to the eclipse with an earlier morning on eclipse day two engines would be stationed in forestville positioned close to the highway for quick response to nearby incidents the two handcrews and four other engines would be prepositioned at field sites around the district and those crew members would camp overnight from friday through tuesday the day after the eclipse kevin an engine captain asked if we are only being paid for 12 hours can we leave or you should increase our hours to 16 the standard full day at fire camps of large incidents another captain agreed and added they should also be receiving field perdiems if they have to stay in the field this represents a rare moment of the field pushing back and possibly directly influencing the eclipse plans kevin doubted the necessity of plans based on uncertain assessments of the eclipses impacts and asked for modifications to improve the working conditions of frontline workers this message was heard by some field overhead when i spoke to nathan he said he agreed with not stashing people at distant guard stations however he wasnt part of the eclipse planning team theyre set on certain locations so im just kind of letting phil and matthew do their thing and im just here to support them respect for the organizational hierarchy that defines the wildland fire service remained firmly in place the closer we got to eclipse day the more skeptical firefighters became of the crowds and chaos predicted earlier in the summer forestville was relatively quiet and newspaper articles and social media posts noted that the promised throngs of customers had not arrived at local businesses fuel prices increased and a few stations ran out of gas or diesel but only temporarily five days before the eclipse i spent the day on an engine with two firefighters each with at least five years of experience joey an assistant engine captain in charge of the engine for the day commented as we drove out of town that it was ridiculously calm and dead here he had talked to his wife that morning as she shopped at a big box store and she said it was empty joey added i bet its busy north in the path of totality if people are coming all this way for the eclipse theyre going to be right in the thick of it several days before the eclipse leadership scrapped the plan to station firefighters at distant guard stations but left in place a 630 am start time the morning before the eclipse at briefing chris another field overhead emphasized the quality of preparation we have a lot of resources weve prepared a lot… were ready he noted that even though they had likely overprepared we can still get stripped down pretty quickly particularly with growing fires in and around the cascade national forest matthew nodded adding that they were revisiting the 630 am start time for tomorrow by evening when we all returned to the fire compound from a day patrolling and responding to fires the start time for eclipse morning had changed to 8 am skepticism just like y2k among field operations firefighters opinions abounded that the approach was overkill even mark the district ranger mentioned this after discussing morgue preparations they are preparing for the worst but he thinks its a possible overreaction he told me hoped it would turn out like y2k a coding problem that led to fears that computers would stop working when the date switched from 1999 to 2000 y2k was a common metaphor for the eclipse in a group interview with three engine crew members rusty the assistant engine captain proclaimed its going to be like y2k he looked at travis who in his midtwenties was the youngest on this engine rusty explained laughing youre too young where everyones going to panic and nothings going to happen travis smiled and affirmed his youth i was six the engine captain kai agreed most of its hype several firefighters told me it could be all or nothing mike a firstyear handcrew member said its going to be a cluster… or its like theyve hyped it up so much its it might feel underwhelming brian another firstyear firefighter on a different engine offered a similar assessment its being billed as the apocalypse but i mean im trying to go into it with zero expectations because i honestly think its gonna be like its either gonna be the shitshow that everybody expects or its going to be a fraction of that jed an engine captain who had worked in fire for over 15 years stated i dont think its going to be as endoftheworld as people are predicting another member of his crew concurred i think there might be a slight increase in traffic and a little bit of stuff like that but i dont think its going to be all you know all hell breaks loose… its not going to be like chaos or anything the morning of the eclipse itself firefighters gathered at 8 am at the fire compound the district staffed seven full engines this was more than would be typical for the height of fire season because of the eclipse fewer firefighters had been permitted to go to fires offdistrict and several engines were partially staffed agency militia people working nonfire departments who filled in on fire assignments unlike most mornings when almost everyone exercised right after briefing and thus wore running clothes to the meeting everyone was neatly dressed in green nomex pants dark blue district tshirts and laced fire boots afmo matthew led the group through a brief risk management discussion and warned of the possibility of impending doom and craziness out in the field he noted that traffic was already backed up on the major highway cutting through town and some cars had pulled off to the side of the highway to watch disobeying instructions from odot toward the end of briefing nathan talked about the lynx fire which was burning roughly 25000 acres west of a nearby town he said that several task forces of engines had just been pulled off the lynx fire and reassigned to a major fire elsewhere in the northwest so if things start burning to houses there well stand up our task force so be ready right after briefing everyone grabbed water bottles and lunch bags and headed to their trucks the engine i was assigned to for the day was part of that task force that would be dispatched to the lynx fire if needed and the first topic of conversation in the engine wasnt the eclipse we were about to see but whether we would be dispatched they dangled the carrot again said rusty referring to the possibility of being dispatched to the active wildfire despite the nearby wildfire we had a clear view of the mountains as we drove out of town to our viewing location we had all been given sets of eclipseviewing glasses and we sat on top of the fire engine to watch the moon slip in front of the sun as we headed back to forestville after the eclipse we waited for several minutes before we could pull onto the main road watching as a solid line of cars drove past kayla said this is what they warned us about we spent the rest of the morning at the fire compound cleaning and organizing equipment and after lunch headed to a campground west of town a common spot to stage in case any fires were reported driving out we could see the smoke column from the lynx fire and talk again turned to why no engines from our districtespecially our enginehad been called to help with the fire the only wildfire call we had that day was a smoldering campfire in a dispersed campground area lit in spite of fire restrictions which we quickly dug into the dirt other engines and the handcrews had similarly quiet days beyond the fire district the worst expected impacts of the eclipse did not materialize there were localized traffic headaches and some isolated fuel shortages but forestville did not need to use its backup morgue and the fire district did not mobilize for eclipserelated wildfires according to oregons office of emergency management state emergency managers received no reports of eclipserelated deaths or injuries… and no humancaused wildfires started in the path of totality despite the high level of preparation widely seen as overkill after the fact i observed no frustration or sense of regret on the part of firefighters after the eclipse when our engine arrived back at base that evening there were a few conversations about how cool it was to experience the eclipse but most of the talk was about the lynx fire discussion and conclusion this paper has examined preparations by disaster managers for simultaneous hazards in august 2017 the hundreds of thousands of visitors expected with the total solar eclipse and the height of wildfire season despite and because of extensive preparation by managers in central oregon and around the state worstcase scenarios largely did not materialize disaster managers developed plans based on uncertain predictions regarding hazards from the eclipse while frontline workers responded to those plans with growing skepticism and a reliance on familiar risks wildland firefighters are an ideal case for exploring generally how people respond to and prepare for uncertain future events and specifically how a category of frontline workers respond to the uncertainties inherent in disaster preparation firefighters are accustomed to what looks like overpreparation they exercise hard daily they carry multiple liters of water and wear protective gear no matter the assignment they have a red baga duffel for overnight or offdistrict fire assignmentspacked and ready and on most days the district has more engines and crews out patrolling than will actually respond to local fires thus they are a population for whom preparation is a routine and expected part of the job firefighters in the field showed confidence in plans based on accepted familiar knowledge related to hazards and likelihood they willingly discussed wildfire hazards and accepted the occurrence of the eclipse without question yet when it came to the impacts of a disaster event with which they had no prior familiarity they showed general skepticism of plans made based on known unknowns or that hinted at the possibility of unknown unknowns these frontline workers generally dismissed risks based on estimations or possibilistic thinking they pushed back on plans to be stationed out in the field for eclipse week identified hazards consistent with their regular jobs and generally downplayed the severity of those hazards this shows that those who are boots on the ground during disaster response recognize the limits of knowledge in disaster planning it also suggests possible constraints on the all hazards approach that currently dominates emergency management in the united states as disaster workers may be less comfortable veering outside of their training and prior experience to respond to different types of disaster events this aligns with research on historical disasters identifying conflicts between those in positions of authority on the one hand and workers and the public on the other applying a theoretically informed understanding of uncertainty and knowledge to this case offers improved insight into how and why disaster managers make decisions and how those decisions are dynamically received by frontline disaster workers my research demonstrates that frontline workers responses to uncertainty is not merely a function of their position in a hierarchy levels of discretion in their daily rounds and how they interact with the public key features of existing streetlevel bureaucracy research rather it also reflects their evaluation of the knowledge that underpins the policies they are called to implement in situations such as disaster preparedness and response where routinization and standardization are challenged by unknowns and uncertainty frontline workers draw on the familiar to evaluate the unknown in this case firefighters evaluated the potential hazards associated with the solar eclipse through the lens of their daily rounds driving and public interactions future research could explore whether this occurs in other cases for example how did frontline emergency medicine workers evaluate the hazards of covid19 early in the outbreak of the illness when uncertainties abounded compared to months later when the arc of the pandemic was better understood familiarity and extrapolation were also central to the development of plans by disaster managers as they reached beyond local experience and occupationspecific risks uncomfortable with the idea that eclipse effects might include unknown unknowns disaster managers developed extended knowledge based on prior events and experiences even though central oregon had not experienced a total eclipse in recent history planners rejected the idea that the eclipses hazards represented an area of nonknowledge or nescience instead they identified known knowns and known unknowns related to the eclipses impacts drawing on eclipses elsewhere other mass gathering events in central oregon and creative thinking to identify and plan for worstcase scenarios however this worstcase planning was resisted by those charged with implementation resistance that intensified as early predicted hazards associated with the eclipse such as overwhelmed cell communications and inundated local businesses failed to materialize how different stakeholders respond to minimize deny or accept uncertainty is central to how those stakeholders do their work making sociological understanding of this phenomenon essential for disaster research moving forward as the prevalence and severity of disasters increases more research is needed on how communities plan and prepare for simultaneous disaster and mass gathering events focusing on the preparedness phase of the disaster lifecycle for both the eclipse and the fire season my ethnographic research was able to identify unexpected commonalities between these dissimilar hazards both involved preparing for worstcase scenarios which may not necessarily materialize with significant implications for disaster management systems and for the allocation of resources both involved preparations that were hierarchical and topdown with few opportunities for input and feedback from ontheground workers to intheoffice overhead this has the potential to decrease buyin from frontline workers who may act with greater discretion in areas of their work that they see founded on uncertain information or unknowns just as crews were reluctant to camp at distant guard stations for the week of the eclipse frontline responders may push back against other risk management policies perceived to be developed with little grounding in experiential knowledge or by office overhead staff who are not engaged in ontheground work these findings matter in a contemporary moment of widespread conspiracy theories and skepticism of public response to disasters while skepticism of hierarchical power structures is central to many conspiracy theories firefighters pushback against disaster plans was instead a reaction to uncertainty in particular a skepticism of predictions and management decisions based on nonknowledge and unknown hazards therefore my research suggests that skepticism of disaster preparation and response may be particularly likely when significant uncertainty is associated with disaster hazards or likelihood understanding responses to disaster preparation is particularly urgent as the risks from wildfires other hazards and associated uncertainties are expected to increase with climate change and intensifying demographic vulnerabilities notes 1 all names of individuals and specific places are pseudonyms 2 the ahimt that i shadowed in my research was most often deployed on wildland fires but had also been dispatched to a hurricane terrorist attack and complex criminal investigation 3 an alternative definition defines the event as a medical incident such as a disease outbreak 4 while wildland firefighters are not clientfocused and often face fewer bureaucratic constraints in the performance of their daily routines than do other types of streetlevel bureaucrats they do interact with the public regularlyparticularly during events like the eclipse but also during routine parts of their job such as patrolling for firesand they have significant discretion in how they perform parts of their jobs 5 this formulation draws on kerwins types of ignorance and grosss classification of knowledge types additional categories discussed by gross and kerwin are worthy of future analysis but are generally beyond the scope of this analysis and thus do not appear in table 1 6 while the typology of known knowns unknown knowns and unknown unknowns is often associated with former secretary of state donald rumsfeld these terms have a longer history in science and technology studies and climate science 7 some mass gathering events cannot be anticipated such as spontaneous public protests 8 cascade national forest cascade county and forestville are pseudonyms as are names of all individuals 9 smokejumpers respond to wildfires by parachuting out of airplanes rappellers lower themselves out of helicopters on cables hotshots are members of handcrews with specialty training and certification all three are considered to be elite wildland firefighters and are deployed to fires around the country not just locally 10 the experience of fulltime firefighters employed by government agencies such as usfs or blm is very different from that of contract crew firefighters most of whom are oncall for extended periods of the fire season and work only when their crew is ordered to a specific fire 11 overtime is expected by all involved supervisors expect firefighters to be willing to work overtime and up to 14 consecutive days to staff crews during peak season and firefighters expect to receive significant overtime to counter their relatively low hourly wage firstyear firefighters earn less than 12 an hour following the federal pay scale while an engine captain earns around 20 an hour for physically and mentally demanding and dangerous work 12 this figure reflects the hierarchy i observed during my fieldwork the hierarchy may take different forms in different agencies or regions 13 i focus on eclipse preparations related to wildfire operations because that was the location of my fieldwork and because that offers the best lens for examining preparation and planning for simultaneous disaster events

as climate change increases the frequency and severity of disasters and population and social changes raise the publics vulnerability to disaster events societies face additional risk of multiple disaster events or other hazards occurring simultaneously such hazards involve significant uncertainty which must be translated into concrete plans able to be implemented by disaster workers little research has explored how disaster managers incorporate different forms of knowledge and uncertainty into preparations for simultaneous hazards or disaster events or how frontline disaster workers respond to and implement these plans in this paper i draw on ethnographic research working as a wildland firefighter interviews with firefighters and fire managers and state and agency planning documents to examine preparations for two events occurring in central oregon in august 2017 1 the height of wildfire season and 2 hundreds of thousands of anticipated visitors for a total solar eclipse i find that different qualities of risk hazard and uncertainty across these two events were central to the development and implementation of disaster plans agency leaders devised worstcase scenario plans for the eclipse based on uncertain predictions regarding hazards from the eclipse and the occurrence of severe wildfires aiming to eliminate the potential for unknown hazards these plans were generally met with skepticism by frontline disaster workers despite the uncertainties that dominated eclipseplanning rhetoric firefighters largely identified risks from the eclipse that were risks they dealt with in their daily work as firefighters i conclude by discussing implications of these findings for conceptual understandings of disaster planning as well as contemporary concerns about skepticism and conspiracy theories directed at government planning and response to disaster events

introduction digital government is a form of implementation of the use of information technology by the government in providing services to the public the development of digital government aims to improve the quality of public services in an effective and efficient way 1 the paradigm of government services which was previously characterized by slow bureaucracy complicated procedures and uncertainty was overcome through the implementation of this digital governance in this paradigm services to the public no longer rely on documents and personal interaction but have shifted to electronic processes so that personal interaction in providing services is no longer needed in addition the orientation in providing services no longer only focuses on production cost efficiency but also focuses on flexibility supervision and user satisfaction the rapid development of information and communication technology has changed the social economic and political order in society the implementation of digital governance which includes the use of digital technology in government and business administration has become an inevitable trend various countries and private organizations have turned to digital platforms to increase efficiency increase transparency and provide better public services to the public generally indonesian people still do not fully understand and respond to the development of information and communication technology most of them only use advanced technology for entertainment purposes searching for information and communicating not only among the general public but even some public servants have not mastered the use of information and communication technology as a means to serve the interests of the public and government in the theory of information search expressed by donohew and tipton 2 the acceptance of a person or group of people to technology takes place gradually through three stages namely search sensing and processing information these three stages are based on social psychologys understanding of human attitudes without realizing it humans tend to avoid information that does not match their real view or picture of information or technology because both can bring potential dangers based on the results of government surveys related to regions and optimization of technology use it is known that papua province has 30 regional governments but none of these regional governments have reached the stage of technology utilization this means that no local government in papua province uses the government website portal to implement part of egovernment 3 in 2016 the development of egovernment in merauke regency began by referring to both relevant laws as the legal basis and was marked by the launch of the official website of the merauke regency government based on presidential instruction no 3 of 2003 concerning national policies and strategies for egovernment development egovernment is very feasible to be implemented as a form of support for the development of services to the community especially in merauke regency around 50 more applications have been carried out to support the implementation of egovernment of course it will improve services to the community several institutions such as in the religious court and district court even the local government carries out aspiration and complaint services with siadu jargon which aims to report mistaken activities for merauke regency government officials one of the success factors in implementing digital government is the readiness of the community to face these changes to support digital transformation the readiness of human resources as technology supporters in digital transformation is needed therefore digital transformation must certainly be accompanied by a change in mindset and behavior that includes knowledge expertise and work culture community adaptation in the face of digital governance is crucial because these changes have a significant impact on the way society interacts with governments and other entities how society adapts to this digital transformation poses an interesting challenge for research in social economic and political contexts the introduction of information and communication technology has changed the pattern of communication and access to information of the community modern society relies on the internet and digital platforms to access public information communicate and participate in social life the current phenomenon in merauke regency is that there are still groups of people who face difficulties in adapting to technology this is due to lack of digital literacy limited access or economic challenges in addition digital governance also raises new issues related to data security and privacy the involvement of governments and organizations in the collection and use of personal data raises concerns about privacy breaches and potential misuse of data by irresponsible parties research on community adaptation in the face of digital governance is very important to investigate the social economic and political impacts of this digital transformation the importance of digital literacy equitable access to technology and data privacy protection needs to be well understood to address the challenges and opportunities presented by the era of digital governance methods the type of research used in this study is a qualitative study with a description approach in the form of reviewing phenomena or events people objects aimed at understanding social phenomena from an angle or perspective of participation participation is a person who is interviewed observable asked to give data opinions thoughts and perception researchers establish close emotional relationships and intimacy with all stakeholders who were met during the study can receive a positive response and got deeper and more accurate information 4 in this research the authors conduct data collection by interacting with the object in a thorough manner analytical techniques are done in a qualitative descriptive in conducting analysis of research data refers to several phases consisting of data reduction data presentation in the final stage is the withdrawal of conclusions or conclusion drawing verivication to look for explanations patterns the withdrawal of the conclusion is done carefully by verifying the form of rereview in the field so that the data can be tested in validation results and discussion accelerating the completion of regulations guidelines and technical standards for the implementation of electronicbased government systems second the completion of digital infrastructure development and development and the acceleration of integration of an integrated and nationally integrated government application system third structuring and simplifying the business process structure of ministries institutions and local governments in response to changing behavior and community service needs in the digital era fourth capacity building and especially in digital literacy to realize the digital transformation of bureaucracy towards a worldclass bureaucracy government information access policy good governance and effective and efficient improvement of public services require egovernment development policies and strategies these policies and strategies are regulated 5 national policy and strategy for the development of egovernment at all levels of government as a whole the results of data analysis show that the access power of the people of merauke regency especially the existence of people in the periphery to get government formation is very limited this happens because the ability of the community is limited so that the space for access to government information becomes limited the limited power of public access in obtaining information occurs due to public apathy in utilizing government digitalization channels and adaptative attitudes although technological developments have made it easier for humans to get information there is still some information that is also needed by the community especially information related to the public realm is still not distributed to the public the release 6 of public information openness is an important moment in encouraging information disclosure in indonesia for the public the law is a form of recognition of the right to information and how that right must be fulfilled and protected by the state as for the government and public bodies the public information disclosure law is a legal guideline to fulfill and protect the right to public information in this regard it is appropriate for public bodies to be able to manage information and documentation so that the public can easily quickly and cheaply get the information needed for this reason egovernment socialization needs to be carried out consistently continuously and incentivized to the community because people do not understand what and how the application of egovernment and the benefits they can take 7 according to the results of a study from harvard jfk school of government to apply the concepts of digitalization in the public sector there are three elements of success that must be owned and considered seriously namely support capacity and value 8 the first element is support is the first and most crucial element that must be owned by the central government and local governments the support in question is the desire and cooperation of all elements of both public officials to implement egovernment key aspects of successful egovernment development such as first a collective agreement to implement egovernment agreement and cooperation for the development of the concept of egovernment in public services will become more effective and efficient second the allocation of various resources to support the implementation of egovernment in public services things that must be considered are resources including qualified human resources sufficient finance energy time and adequate information third the construction of various infrastructures and supporting superstructures to create a conducive environment for developing egovernment fourth dissemination of the concept of egovernment evenly consistently and comprehensively the next element is capacity namely the existence of an element of ability or empowerment from the government in realizing egovernment in public services into reality according to 9 to realize the above there are four aspects that must be owned including first the availability of sufficient resources to implement various egovernment initiatives second the availability of adequate technological infrastructure third the availability of human resources who have the competencies and expertise needed in the application of egovernment this capacity element is the authority of public officials to achieve their duties to the maximum the last element is value meaning that various egovernment initiatives will be useless if no party feels benefiting from the implementation of the concept and in this case what determines the magnitude of the benefits obtained by the existence of egovernment is not the government itself but the interested community according to 10 digital transformation provides more information communication and connectivity enabling new forms of collaboration within networks with diversified actors challenges in the digital space must be balanced with digital literacy for the community as an effort to build an adaptive attitude to the digitalization community as an idea in growing public awareness in adapting the digital adaptation process can occur by providing space for the community to actively participate in utilizing digital space public participation in the implementation of digitalization of governance during the development of the digital era people are required to be able to participate in the implementation of decision making community readiness in digital literalization is an integral part of the process towards digitalization of governance in this study we develop and test related to the readiness of society in the digital era from the analysis data it shows that public participation in the implementation of digitalization governance is partly participating and some have not participated in accordance with research conducted by 11 stated that participation in the development of egovernment in indonesia with the type of direct participation where the existence of the community must be directly used in achieving the governance component especially in the component of policy making and consultation this is because some people know the use of digitalization because of individual abilities they can access data properly and correctly some people do not know how to carry out digitalization because they do not know how to implement it the principle of community participation requires that people must be empowered given opportunities and included to play a role in the public policy process in order to strengthen public participation the government can do by 12 a issuing information that can be accessed by the public b organizing a consultation process to explore and collect input from stakeholders including citizen activities in public activities delegating authority to users of public services such as the planning process and providing guidance for community activities and public services according to 13 classifies participation into 2 based on the way of involvement namely 1 direct participation participation that occurs when individuals display certain activities in the participation process this participation occurs when anyone can express views discuss the subject matter raise objections to the wishes of others or to his or her speech 2 indirect participation participation that occurs when individuals delegate their participation rights the existence of information technology will greatly assist the government in its efforts to explore and collect information and input in public policy one of which is through the use of egovernment the world bank defines egovernment as follows egovernment refers to the use by government agencies of information technologies that have the ability totransform relations with citizens businesses and other arms of government government activities in carrying out government policies need to listen to the activities of the community its just that the government must carry out policies starting in gradual stages this is in line with research conducted by wong at el which states that the government in implementing digital governance needs to carry it out in stages or the government may also jump to the next stage if the community already understands digital governance 14 public participation is indeed very necessary to support the improvement of the implementation of digitalbased government therefore in the city of merauke most people already understand how to access information most of them also do not understand how to access information socialization or giving the public the ability to access information is part of the governments ability to run a clean and open government this is in line with research conducted by setyawati etal which stated that due to public information disclosure communication is not only carried out internally implementing policies because implementers must also be able to communicate information properly to the public 15 empowerment of community groups in digital literacy empowering communities in the era of globalization and digitalization always involves implementing digital literacy to prepare for the rapid developments in the future the continuous application of digital literacy in peoples lives can drive the progress of society according to unesco the concept of digital literacy is a crucial foundation for understanding technology information and communication devices one aspect of this concept is ict literacy which focuses on technical skills involving the community in line with the development of digitalbased culture and public services the development principles of digital literacy as proposed by mayes and fowler 16 are hierarchical it consists of three levels of digital literacy first digital competence which includes skills concepts approaches and behaviors second digital usage which refers to the application of digital competence in specific contexts third digital transformation which demands creativity and innovation in the digital world because technology plays a significant role in digital literacy several steps can be taken to implement digital literacy in community empowerment digital literacy in schools should be developed as an integrated learning mechanism within the curriculum or at the very least connected to the teachinglearning process students need to enhance their skills teachers should increase their knowledge and creativity in teaching digital literacy and school administrators should facilitate teachers or educators in cultivating a culture of digital literacy within the school a providing computers and internet access in schools is vital for advancing knowledge in this digital era learning resources required by students especially related to information and communication technology can be readily accessed through the internet b providing information through digital media placing digital screens and information boards at strategic points within the school environment can assist students in gaining new knowledge and information adapting and applying these digital literacy practices in community empowerment can foster progress and development in facing the challenges of the digital era digital literacy within the family can be initiated and applied by close individuals or immediate family members such as parents who should serve as exemplary role models in using digital media parents should create a communicative social environment within the family especially concerning their children building interactions between parents and children in utilizing digital media can involve discussions and sharing positive experiences with digital media the next step to develop digital literacy within the family includes providing reading materials related to digital media focusing on information and communication technology in the form of newspapers magazines books and soft copies accessible through computers and gadgets selecting educational tv and radio programs for family members especially children as sources of knowledge providing computers laptops devices and internet access in the family is one of the essential efforts in advancing knowledge in this digital era the familys need to learn about information and communication technology should be supported by the availability of computer devices and internet access at home digital literacy in society refers to the utilization of technology for communication and information dissemination while educating the public using networked technology to promote wise usage of technology information communication devices in society have transformed into communication tools that not only offer telecommunication features but also provide access to data the global information society considers wireless communication devices a necessity that influences lifestyles especially in accessing and distributing information observing the impact of technological advancements in indonesia it is evident that almost everyone owns a mobile phone the use of smartphones equipped with advanced features has facilitated interactions with friends relatives and social media applications through internet networks the development of virtual social networks represents the next stage in the transitional era towards an information society indonesians have established networks to share information without constraints of distance and time pertaining to law no 19 of 2016 on information and electronic transactions the features that need attention encompass all forms of network technology several specific targets for implementing technology in society include increasing the quantity and variety of digital literacy reading materials available in every public facility increasing the number of public facilities that support digital literacy increasing active community involvement in digital literacy activities increasing the utilization of digital media and the internet to provide access to information and public services increasing the number of impactful and applicable digital literacy training programs for the community the dissemination of information and knowledge through various social media platforms which most people are using allows society to express aspirations and opinions while considering the appropriateness aspect without harming others digital literacy can also lead to economic goals being realized for example through understanding online transactions in summary digital literacy instills selfawareness in individuals about themselves and the dynamic world enabling them to participate more effectively in social life and embrace lifelong learning literacy culture is a mirror of the nations progress so it is necessary to have awareness of each individual in building selfcapacity in a sustainable manner with the support of policies infrastructure and management that suswandari clearly built 17 for this reason there is a need for government support both central and regional to be able to develop it especially here is a digital literacy culture for village government officials in realizing smart villages conclusion the governments acceleration of digital transformation focuses on four key aspects resolving regulations and technical standards for electronicbased government systems developing digital infrastructure and integrating egovernment restructuring government business processes and enhancing digital literacy to achieve bureaucratic transformation government information access policies are governed by the national policy and strategy for egovernment development aimed at improving effective and efficient public services community participation in the implementation of governance digitalization can be done through both direct and indirect involvement with government support in providing information and involving the public in the policymaking process empowering community groups in digital literacy is essential to face the challenges of the digital era digital literacy can be progressively implemented in schools families and communities to enhance understanding and skills in utilizing information and communication technology

in an increasingly digitally connected era governments and private organizations continue to move towards implementing digital governance to improve service efficiency transparency and responsiveness this digital transformation process has had a significant impact on society the adoption of information and communication technology has changed the way society interacts with governments companies and fellow community members therefore community adaptation is an important key in facing this change the purpose of this study is to describe how society adapts to changes due to the adoption of digital governance this research uses qualitative methods by collecting data through indepth interviews and content analysis from reliable sources an interdisciplinary approach is used to look at social economic and political aspects in the process of community adaptation the results show that peoples adaptation to digital governance involves a number of challenges and opportunities on the positive side the adoption of technology has accelerated access to information and public services increased public participation in decisionmaking processes and empowered specific community groups however there are also negative impacts such as the digital divide data security issues and inequality of technology access that affect some groups of society this research highlights the importance of digital literacy and inclusion in helping society adapt to these changes strengthening education and training in the use of technology will help reduce the digital divide and increase peoples active participation in digital governance

with institutional history  with teleological theories of the inevitable decline of religion in the west being step by step dismantled it is now time for presentday historians to concentrate more attention on the particular adaptive and evangelistic strategies of churches and religious groups  several of the most influential recent studies of religious change in modern europe have argued that the term pluralism and not secularisation best captures the types of change occurring in the nineteenth and twentieth centuries  these studies argue that with modernity came variety in ideas and popular expressions churches some of which had been national institutions enjoying the privileges that came with state support found themselves in a marketlike situation where they had to compete with powerful rivals for the affection and allegiance of the people since religious decline eventually became a reality we may conclude that they all lost this struggle yet bearing morriss suggestion in mind one may ask is it not a presumption to assume that the churches always failed in their efforts historians such as hugh mcleod have pointed at the ways in which smaller conservative denominations were able to successfully modify their operational mode in the radical climate of the late s  but what about the larger churches with a national reach could they not at least momentarily successfully change their ways in order to halt their downward slide to better understand this transition to religious pluralism this article focuses on sweden during the years from  to  with attention directed to the lutheran church of sweden until the turn of the twentyfirst century this episcopal body was an established church with a membership quota still in excess of  per cent of the total populationthe epitome of a national protestant institution  historians of religious change in sweden have in general been content with working within a narrative that links secularisation to modernisation finding the roots of declining religious practices and the disintegration of a collectivistic religious culture in overarching structural processes of change  as may be expected few attempts have been made to ponder seriously the impact of expressions of church activism and parish renewal  by investigating childrens catechetical activities and analysing statistics related to among others lay leadership and teachers this article argues that the church of sweden demonstrated a considerable ability to effectively adapt to changing social conditions during this period  the case presented suggests that a religious establishment was able to postpone the demise of some popular expressions of christianity by unremitting adjustments to meet contemporary demands with statistical data ranging from the s to the late s this article sets out to examine the diocese of växjö a predominantly rural diocese located in southern sweden the diocese covers a majority of småland county and is in its presentday form the result of an amalgamation with the diocese of kalmar in  even though the diocese has shown relatively high levels of lay activity  the manner in which the churchoriented activities analysed in this article evolved is fairly similar to that of most other swedish dioceses  it seems reasonable to assume that this regional study can serve as a model for the processes of change occurring in other parts of sweden sunday schools in a mobilising church it was the low church segment within the national church that first advanced the idea of sunday schools in sweden during the first half of the nineteenth century the inspiration came mostly from likeminded groups in britain but when compared to britain the advent of sunday studies applying the pluralist frame of reference see stefan gelfgren ett utvalt släkte väckelse och sekularisering evangeliska fosterlandsstiftelsen  skellefteå  and erik sidenvall a classic case of dechristianisation religious change in scandinavia c  in callum g brown and michael snape secularisation in the christian world essays in honour of hugh mcleod farnham    for an early examination of sunday school teachers and similar categories of lay church functionaries see naomi stanton thompson a culture of blame sunday school teachers youth workers and the decline of young people in churches crucible   naomi thompson argues that the decline of sunday schools in britain was largely owing to their institutionalisation and growing rigidity when faced with young peoples changing ways of life a similar process is discernible in sweden yet there is ample evidence to demonstrate the resourcefulness of the swedish churches when encountering above all young families young people and church since  engagement and exclusion london     see for example the national survey published in svenska kyrkans årsbok  stockholm   see also berndt gustafsson svensk kyrkogeografi med samfundsbeskrivning lund    ingmar brohed sveriges kyrkohistoria viii religionsfrihetens och ekumenikens tid stockholm    e r i k s i d e n v a l l schools in sweden was faltering and late  at first they were established to provide basic education for the poor it was only in the latter half of the nineteenth century that they gained their exclusively religious connotations such activities were in general sponsored by independent groups of believers forming selfgoverning mission societies in some localities they were aided by a benevolent local clergyman  however sunday schools were far from welcomed by every representative of the national church first and foremost a majority of the clergy saw them as unnecessary the compulsory school act of  aimed at creating a parishbased schooling system for younger children these schools were firmly integrated into the national ecclesiastical system local school boards were organised as committees under the parish council with the minister acting as the statutory chairman until the s instruction in the lutheran creed formed a central part of the curriculum therefore it was not farfetched to claim that these decentralised educational institutions actually provided fundamental christian instruction administered by a trained and committed teacher to every baptised child with such provision the need for additional teaching activities did not seem like a pressing concern in addition sunday schools also suffered by their association with schismatic evangelical revivalism from the s onwards large sections of the low church phalanx were beginning to look with unease at their continued association with the national church despite official antagonism they started to form independent groups of believers and worked strenuously for the religious uplift of the populace at large sunday schools were a device in their activist toolkit many of those who espoused such autonomous religious sentiments and thus provoked the ire of stalwart churchmen formed a separate religious body the swedish covenant church in   in such a situation sunday schools organised by the evangelical free churches seemed like proselyte schools for the sect system to borrow the words of one early twentiethcentury bishop  it goes without saying that local sunday school enthusiasts could not count on the endorsement of the ecclesiastical leadership this hostile position began to change around the turn of the twentieth century traditional visions of the parish as a unified religious community were by now merely a mirage urbanisation and signs of declining parental religious socialisation the growing political strength of the evangelical free churches and the rise of anticlerical socialism led many loyal supporters of the established church to fear for the future save the staunchest reactionaries there was a growing sense among leading ecclesiastics that something new was needed to meet the threat that seemed to be mounting activities that had hitherto been frowned upon such as sunday schools were now being seriously contemplated among a broader segment of church people clergy and laity alike  their vision was mostly rooted in a resolute political conservatism now forced into action sweden as a nation was in danger what was needed was a rejuvenated and vigorous church in a muchread pamphlet from  manfred björkquist a future bishop of stockholm declared that the church wants to gather all of the people of sweden not that they shall be only a onechurch people but that all shall become part of gods fold through jesus christ by its very existence swedens church dares to believe that the swedish nation can become a people of god  as civil servants the clergy were bound by oath to adhere to the ordinances of the church law and the municipal act of  these pieces of legislation together with detailed instructions issued by the swedish government and by the diocesan chapters structured the religious duties of the local clergy and by extension every parish within the realm in these statutes one could find instructions for conducting the religious life that revolved around the parish church if previous generations viewed these ordinances as sufficient for maintaining the spiritual vigour of the nation the generation that rose to maturity towards the end of the nineteenth century began to see them as just the first steps towards the building of an ecclesiastical edifice fit for its presentday task clerical opinion began to talk about the need for noncompulsory work in this context noncompulsory work refers to religious activities that were not prescribed by the then existing religious legislation ideally it was to be performed by small teams consisting of both clergy and lay members of the parish in the first number of the recently launched church magazine församlingsbladet that appeared in  the editor expressed a need to enliven and strengthen a concern for the tasks that not only fall on the church and her representatives but on every christian as a member of this body   bexell sveriges kyrkohistoria vii   kyrkan vill i sig samla allt sveriges folk icke på det att det må bli endast ett kyrkofolk utan på det att sveriges folk må bli till ett guds folk genom jesus kristus sveriges kyrka vågar genom själva sin tillvaro tro att sveriges folk kan bli ett guds folk manfred björkquist kyrkotanken uppsala    väcka och stärka intresset för de uppgifter som åligga icke blott kyrkan och hennes män utan varje kristen som en medlem av denna kyrka församlingsbladet  for studies of noncompulsory work in the church of sweden see  e r i k s i d e n v a l l in order to preserve the integrity of the national ecclesiastical fabric the clergy were placed at the centre of these activities without their participation and leadership all advances in parochial life could be understood as but the first step to dissent no autonomous societies in which people applied for membership were to be created instead loosely organised groups of volunteer workers were formed around the local minster they were using the terminology of the time his helpers the evolution of noncompulsory work in church of sweden parishes was greatly aided by the advancement of a new understanding of the role of christian laity with inspiration from reformminded german lutherans one of the leading champions of renewed parish life professor olov holmström filled the sixteenthcentury concept of the priesthood of all believers with new and activist content pastors who had hitherto toiled on their own in populous parishes should from now on be aided by groups of committed parishioners together they should be able to make the local church better suited to the many needs of the present age  several influential clerical groupings gave vigorous support to the idea of local parishes as hubs of activity the most important of these was the national union of swedish clergy formed in  this association which enjoyed widespread support was above all intended to advocate for the formation of church youth clubs led by the local clergy a separate board of youth care was organised in  with holmström as chairman the board also published a monthly at first heavily nationalistic and royalistic church youth magazine sveriges ungdom  at this time noncompulsory work had begun to grow rapidly within the national church above all in the central parts of sweden after some considerable manoeuvring in the national synod it was decided in  that a national body supporting these activities should be formed the objective of this new institution within the state church apparatus was to strengthen the novel expressions of parish activity that now were springing to life  in other words after having gained government approval the church of swedens diaconal board organised itself for example lennart tegborg församling vision och verklighet skara  and erik sidenvall medarbetare en historia om organisation och lekfolksuppdrag i svenska kyrkan stockholm   these ideas were put forward in a work much read at the time olof holmström evangeliskluthersk församlingsvård med särskildt afseende på förhållandena inom vår svenska kyrka lund   sture fjellander korset och ringen det kyrkliga ungdomsarbetets organisationshistoria  stockholm    brohed sveriges kyrkohistoria viii  as a kind of state department for a mobilising church young and energetic clergy fired by the vision of a rejuvenated national church immersed themselves in the work of this agency  from its onset the diaconal board engaged in vigorous publishing activities which produced a range of church magazines and instructional manuals aimed at various kinds of volunteers  regular instruction courses were arranged to equip groups of committed parishioners for new tasks these courses together with separate youth conferences toured the country during the s and s  to provide further support to the new kind of lay workers that emerged during the first decades of the twentieth century the diaconal board set up a church of sweden laymans school located in sigtuna on the outskirts of stockholm in  more substantial courses lasting for up to two months for sunday school teachers and youth group leaders were a priority young women above all flocked to these courses  in response to the secularisation of the swedish primary school system the laymans school offered hugely popular teacher training courses between  and  all of these were intended to offer further instruction in the lutheran creed but also served to prepare lay individuals for service in church of sweden sunday schools  primary school teachers many of whom received training at the laymans school were to become key figures in local noncompulsory church teaching activities starting in the s additional bodies were organised with the aim of supporting the noncompulsory work of the church these took the form of regional diocesan councils headed by a bishop and composed of interested clergy and lay parish representatives in the växjö diocese such a body was formed in   gradually these regional organs assumed responsibility for the educational activities previously organised by the diaconal board the växjö diocesan council organised its first course for sunday school teachers in january   these courses were to become staple parts of diocesan life for many years during the s there was a further decentralisation of educational management for sunday school volunteers with the rapid increase in the number of parish sunday schools there was now a solid base for organising shorter instruction courses at the deanery level for those unable to attend  fredrik santell svenska kyrkans diakonistyrelse tillflöden och tillkomst organisation och verksamhet intill  uppsala    ibid   fjellander korset och ringen   algot tergel svenska kyrkans lekmannaskola  år i kyrkans tjänst sigtuna    ibid   lars aldén stiftskyrkans förnyelse framväxten av stiftsmöten och stiftsråd i svenska kyrkan till omkr  lund    växjö domkapitlets cirkulär   e r i k s i d e n v a l l these the diocesan council recommended the formation of local study circles it was even possible to take a correspondence course designed by the sunday school committee of the diaconal board  that promised to provide the essentials for a prospective but untrained sunday school teacher the rise and fall of parish sunday schools it is impossible to tell when and where the new kind of manifestly churchoriented sunday school emerged within the växjö diocese autonomous groups of believers had already organised sunday schools during the first decades of the nineteenth century  some of these groups were steadfast in their loyalty to the national church others drifted towards secession by the early twentieth century there were still only a handful of parish sunday schools within the old diocese of kalmar  largely owing to the disinclination of its backwardslooking bishop n j o h lindström no such figures exist for the diocese of växjö for this period with the arrival of ludvig lindberg first bishop of the now merged diocese however the clergy had gained a superior who was a fervent believer in the need for a forward movement in parish life including the organisation of sunday schools in as many parishes as possible at first however the results were meagre figures presented in  communicated during the first clergy conference of lindbergs episcopate reveal that churchoriented sunday schools were to be found in only twentythree out of a total of  parishes examining these statistics more closely it is evident that some of these schools were considerable enterprises in one rural parish  children were enrolled in the sunday school and in jönköping the largest town in the diocese  children went to class before sunday morning worship began  the statistics further demonstrate that there was a rapid expansion of sunday school provision during the next couple of decades in  sunday schools were organised in sixtyseven parishes seven years later that figure had risen to  parishes  by  it was estimated that sunday schools were organised in more than  per cent of the parishes in the diocese  in other words in a little more than twenty years the  svenska kyrkan centralråd arkiv söndagsskolnämnden styrelse och au protokoll  protokoll från stiftandet av kyrkans brevskola  snaa ai  fridén svensk söndagsskola  however just as the advocates of the sunday schools were beginning to celebrate the successes of recent years the first signs of decay set in in spite of the introduction of an agebased class system and various efforts to renew and modernise its gatherings contemporaries began to complain that it was primarily younger children who were attending preteenagers were no longer so easy to attract postwar youth culture was beginning to find the kindly teaching offered in sunday schools rather suffocating and parents were less and less likely to force their young people to attend  as one of the ministers in växjö phrased it in the mids it is not cool to be in sunday school when you are twelve or thirteen years old  a similar pattern is discernible in other church of sweden dioceses   handlingar angående prästmötet i växjö  växjö    c d field counting religion in britain  secularization in statistical context oxford    statistics as presented in svenska kyrkans årsbok  stockholm   it should also be mentioned that unlike their free church equivalents the church of sweden sunday schools appear to have held their ground relatively well during the s berndt gustafsson the decline of sunday schools in sweden  social compass xv   gustafsson decline   det anses icke tufft att gå i söndagsskolan när man är tolv och tretton år prästmötet i växjö  växjö   see also handlingar angående prästmötet i växjö  växjö    svenåke selander från ungdomsvård till ansvarstagande från fostran till delaktighet in anders ranger gunilla selander and svenåke selander på en gång så djupt och så vitt som möjligt om kyrkligt ungdomsarbete i lunds stift  lund    e r i k s i d e n v a l l in order to meet the needs of preteen youths there was a push for weekday junior clubs designed to offer christian instruction to those who had abandoned sunday school in  these junior clubs had about  members in the växjö diocese  membership figures remained stable throughout the period covered in this article  starting in the s sunday school numbers dropped slowly but steadily in  for example there had been  sunday schools within växjö diocese with a total of  children enrolled  twelve years later that figure had dropped marginally to  children  after that a period of rapid decline set in between  and  the numbers of children attending sunday schools fell by almost half  in  only  children attended sunday schools within the diocese  by the s the evidence was irrefutable with every year that passed parents were less and less inclined to send even their younger offspring to sunday schools to those with children in the s and s sunday schools increasingly seemed obsolete a remnant from a less affluent leisured and mobile past family and vacation patterns started to change in  the government instituted a fourth week of statutory vacation the fiveday work week was gradually introduced in the latter half of the s and in  teaching on saturdays was abandoned in all swedish schools swedish postwar prosperity had made the family car a reality even for workingclass families with the car came new opportunities for weekend travel and social activities away from home for the modestly prosperous a countryside cottage became a hallowed retreat filled with idyllic dreams of crossgenerational summer vacations and male diy work in such a scenario when weekends became a time of relaxation as well as an opportunity to escape the tedious routines of work and school it was only too easy to leave sunday schools behind the vision of sunday as a day apart drifted away there was more than one parent in sweden at this time who would have agreed with the man cited by hugh mcleod who declared that church activities just tend to bugger up sundays  this did not however mean that parents were averse to church activities as such or that churchsponsored religious socialisation declined altogether that churchbased teaching classes still enjoyed a considerable popularity especially in expanding suburban areas is demonstrated by the manner in which mothers with preschool children immersed themselves in the weekday activities that now were organised as an evolution of the sunday school model for a brief interval from the late s until the early s childrens church hour achieved an enormous popularity childrens church hour was a teaching concept that emerged from below originating in the diocese of härnösand in the late s  it spread gradually over the country in response to changing demands and declining sunday observance it should be noted that this teaching concept had a much freer form than the sunday schools allowing for experimentation and local adjustments in the diocese of växjö it was estimated that  children aged four to five took part in these activities in   seven years later there were  childrens church hour groups within the diocese similar figures were presented for other church of sweden dioceses  the total number of participants was at this time not even counted a cautious estimate of fifteen children per group would give a total of about  attendees in the växjö diocese if added to the existing sunday school figures a total of no less than about  children were involved in church teaching activities in växjö in the late s but these were far from the only activities on offer at this time in bustling church community centres a majority of which were erected in suburban areas during the s and s children could also be found in other new kinds of agebased initiatives  these numerical tabulations of sunday school participation may actually be more important than might be at first assumed sunday school statistics are regularly counted among the socalled indices of religion readily used by presentday scholars to demonstrate shifting religious trends during the twentieth century it is easy to forget that sunday schools were not the only childrens activity on offer and that there was considerable creativity among the churches in adjusting to contemporary demands without paying close attention to the ways in which the churches responded to the decline of sunday schoolsby forming alternative groups which were in turn highly popularwe may miss the finer points of the religious history of northwestern europe the statistics presented above could be used to call recent claims about an accelerating  härnösands stifts prästmöteshandlingar  härnösand    prästmötet i växjö  växjö    prästmötet i växjö    sidenvall medarbetare   e r i k s i d e n v a l l mass exodus from church activities during the long s into question  at least if looking at sweden however the childrens church hour and the successes of the s did not last for long these decades saw the farreaching expansion of the swedish welfare state in order for the social adjustments that this required to take place an expansion of the female workforce was a prerequisite by the s it was more or less taken for granted that women with children were expected to work at least part time outside the home domesticity had at last come to an end in sweden this change was eased by the tax reforms implemented in the first half of the s and by the swift development of a modestlypriced childcare system in this context the churchs efforts at social provision manifesting itself in the childrens church hour became rapidly obsolete it vanished almost as quickly as it had once appeared no popular alternative was ever able to take its place sunday school teachers c  as an expanding venture sunday schools were in constant need of more people willing to assume teaching responsibilities long before the peak years in the late s contemporaries frequently complained about the lack of volunteers in kyrka och hem the växjö diocesan magazine the at the time influential area dean arvid karlsson expressed the feelings of many by alluding to matthew ix the church waits and prays to god for many more faithful and persistent labourers in the plentiful harvest this is not the time to delay or to resign in hopelessness before the superficial advances of dark powers  in spite of such fears even in a thinly populated diocese there were many who gathered to take care of the plentiful harvest who were these volunteer teachers how many were involved in this line of church activity what can be said about their social characteristics given the informal and semiorganised nature of local noncompulsory work few manuscript sources exist that could offer a clearer view of the men and women who were involved in these activities not even records of those who attended the diocesan sunday school instruction courses have survived to any great extent however at irregular intervals the diaconal board and the diocesan  research into religious change in scandinavian countries during the s is still in its infancy for some early results see sidenvall a classic case  kyrkan väntar och beder gud om många många fler trogna och trägna arbetare i den myckna skörden här får icke bliva ett avstannande icke något av hopplöshetens resignation inför mörka makters skenbara framsteg kyrka och hem   s w e d i s h s u n d a y s c h o o l s t a t i s t i c s council gathered some rudimentary figures for the teaching workforce a close and contextualised reading of these documents allows a partial answer to these questions in general terms the number of teachers seems to have grown as the number of sunday schools increased it should be noted that the figures for the period from  to  include clergy actively involved as sunday school teachers during the relatively early phase of the late s a statistical survey conducted by the diocesan council reveals that in växjö there were  sunday school teachers active within the diocese  in  that figure had risen significantly to   eight years later available statistics indicate a further rise a total of  sunday school teachers were active in   according to the comprehensive survey of the noncompulsory work conducted by the diaconal board in  the sunday schools in växjö diocese were served by no less than  teachers  to a considerable extent these people also served as leaders in the emerging junior clubs as may be expected a consequence of the years of slow demise in the s was that this group of sunday school teachers also diminished in size yet the decline was not as fast or as sizeable as may have been expected even when växjös sunday schools were but a shadow of their former glory there were still large numbers of people involved as teachers in the diocese for the  children that still went to sunday school in  there were no less than  teachers  ultimately a core group of sunday school teachers was loyal right to the bitter end it is hardly surprising that throughout the period covered in this article there were considerably more women than men involved in sunday school teaching save the clergy there are only a handful of men to be found on växjös rosters the statistics for  for example reveal that only  per cent of sunday school teachers were nonordained men all of these men were active as primary school teachers  throughout the s the proportion of nonordained men appears to have remained the same  these figures should of course be related to the gender regime of the era according to which the care and education  växjö stiftsråds arkiv växjö stifts nämnds för kyrkans barnoch familjearbete arkiv förteckning över söndagsskolorna     snav dii  svenska kyrkans diakonistyrelses arkiv söndagsskolnämnden statistik över söndagsskolor snaa h  växjö stifts hembygdskalender xlvii   svenska kyrkans årsbok    ekström svenska kyrkan   svenska kyrkans diakonistyrelses arkiv söndagsskolnämnden statistik över söndagsskolor snaa h see also kyrka och hem   see for example diakonistyrelsen församlingsutskottet  års utredning om den frivilliga kyrkliga verksamheten snaa fbb  e r i k s i d e n v a l l of children primarily was seen as a womans task an essentialist assumption about the caring nature of women was taken for granted in largely conservativeminded church circles women seemed naturally inclined and by nature well equipped for the formation of young minds such widelyheld beliefs added to the feminising drift of much of modern church life  the constant stream of complaints that men were missing from the ranks focused on the disciplinary authority which sunday school teaching lacked as a result men were needed to keep track of unruly boys as one clerical observer remarked in the s male teachers were desperately needed for the boys who are difficult to retain  such effusions should not distract us from the fact that men did feature within sunday school circles at least until the s a large segment of the clergy formed part of the committed core of teachers statistics from växjö in the late s indicate that a total of  ministers were active as sunday school teachers  somewhat surprisingly as early as the s the clergy started to excuse themselves from taking an active part in sunday schools statistics from  reveal that out of a total of  active clergy only  were directly involved as sunday school teachers  in quasinormative documents produced around this time the clergy were being attributed with a monitoring and organising function ideally it was the laity who should act as teachers  the reason for this change in attitude remains unclear but it is probable that the s increase in the number of active laity paved the way for this shift in roles this trend continued and became even more visible during the following decade by the s very few of the clergy were directly involved in the daytoday business of sunday schools clergy had receded into the background and had become merely their supporters and wellwishers it had never been the clergy who were the central figures in church of sweden sunday schools it was in fact their wives for the maintenance and assurance of adequate teaching quality clergy wives were of  for a recent assessment of the socalled feminisation thesis see patrick pasture beyond the feminization thesis gendering the history of christianity in the nineteenth and twentieth centuries in jan de maeyer and others gender and christianity in modern europe beyond the feminization thesis leuven    manliga lärare med hänsyn till pojkarna som äro svåra att hålla fast handlingar angående prästmötet i växjö  växjö    the active clergy consisted at this point of  men figures taken from sven håkan ohlsson statistisk matrikel över svenska kyrkans prästerskap  lund    see idem statistisk matrikel över svenska kyrkans prästerskap  lund   svenska kyrkans årsbok    handbok i kyrkligt söndagsskolarbete stockholm   inestimable importance in the statistical summaries of sunday school workers they are not counted as a separate group yet everybody knew that they were ubiquitously present bishop lindberg stated what was obvious to everyone at the clergy conference of  a clergyman has a good yes one may say the best coworker in his wife this is as it should be united their labour produces manifold blessings  until the s it was taken for granted that involvement in sunday schools was one of the duties of a clergymans wife however that is when conditions started to change for them younger generations of often welleducated clergy wives were not unaffected by changing attitudes visàvis an expansion of the married female workforce  on top of that new groups of paid parish functionaries were now increasingly put in charge of managing a whole range of parish activities suddenly the unpaid services offered by clergy wives were not in such high demand as they had once been oral history enables a glimpse of a shift that was expressed with not a few notes of bitterness by an older generation one informant born in  remembers how after moving with her husband to a new benefice in the s she was suddenly deprived of most of her former areas of responsibility the parish community centre seemed to be filled with salaried staff who did the things i had done without pay but with a more limited scope  at least for an older generation of clergy wives sunday schools were something like a last bastion they remained at their posts even when the crowds of children had vanished  together with likeminded sisters their continued presence accounts for the fact that there was still a large group of sunday school teachers in växjö during the waning years of the s  statistical figures reveal that another clearly defined group of women should be counted as amongst the pillars of the sunday schools it is possible to identify a group of male primary school teachers in the statistics but these individuals were by far outnumbered by their female colleagues in  no less than  per cent of all lay sunday school teachers within the diocese of växjö were in fact trained primary school teachers  of a total  en god ja man kan säga bästa medhjälpare har prästen i sin hustru detta är som sig bör förenade i arbetet verka de mångdubbelt till välsignelse handlingar rörande   alexander maurits prästfrurollen under förändring prästfruar i växjö stift berättar in ulrika lagerlöf nilsson and birgitta meurling vid hans sida svenska prästfruar under  år ideal och verklighet skellefteå    gjorde sådant som jag utfört oavlönat …om än i mindre skala quotation from ingrid diöss account  aug  but see also brita söderwalls account  sept  lunds universitets kyrkohistoriska arkiv swedish national archives   lennart tegborg församlingenvision och verklighet skara    ekström svenska kyrkan   e r i k s i d e n v a l l of   per cent of these were women  this illustrates the strong connection between church and school that still existed during the s the separation of church and primary school was a protracted affair the disappearance of the lutheran catechism from the curriculum in  did not stop teachers loyal to the national church from believing that a catechetical function was at the heart of their professional identity that the primary schools from the s and onwards were run by the municipalities had at first little impact on such ideals in fact before the construction of church community centres sunday schools often gathered at the rectory or at the teachers home arenathe local school building only gradually did teachers begin to see their calling in a new and less religious light clergy and teaching staff drifted apart and just as the clergy started to fade away from active participation in sunday schools during the s so too did the teachers from the s onwards statistical surveys indicate that it was not as easy to enrol younger generations of female professional teachers in sunday school work as it once had been however since older generations of teachers remained loyal there was still a significant proportion of primary school teachers active in sunday schools during the final years of the s in växjö diocese  per cent of all sunday school teachers belonged to the teaching staff of a local school in   after that point in time teachers were no longer singled out as a separate category in statistical summaries of sunday school staff a clear indication that their former numerical strength had gone in spite of the fact that a typical sunday school teacher was likely to be a middleaged woman young people frequently became involved in sunday school work this was particularly the case before the s to be a sunday school helper was listed among the activities suitable not only for children of the clergy but also for the committed church youth club member and for young students at teacher training colleges their numbers appear never to have been significant and for natural reasons they may have served in this capacity for only limited periods of time the comprehensive statistics gathered by the diaconal board in  indicate that about  per cent of sunday school teachers in växjö diocese were below the age of twenty  during the following decade the young seem to have been less and less motivated to do volunteer work in sunday schools in  the växjö diocesan council stated  växjö stifts nämnds för kyrkans barnoch familjearbete arkiv förteckning över söndagsskolorna     snav dii  diakonistyrelsen församlingsutskottet  års utredning om den frivilliga kyrkliga verksamheten snaa fbb this survey which covered all swedish dioceses reveals that in växjö the quota of professional teachers was uncommonly high  svenska kyrkans årsbok   as a wellknown fact that young helpers had abandoned sunday schools  however this should not be taken as a sign that young people had stopped volunteering for church activities altogether it was in fact the sunday school itself an institution that by now had acquired a certain degree of stodginess that failed to attract a younger generation as volunteers they instead joined other churchsponsored childrens activities or immersed themselves in a still vibrant church youth movement  a birds eye view of the statistics indicates that new categories of women must have committed themselves to sunday school work during the s the gradual withdrawal of the professional clergy and female schoolteachers led to a democratisation of the teaching staff this fed into the overall strategy of the postwar national church in order to maintain its position within the population at large there needed to be a farreaching mobilisation of the laity to serve alongside the clergy in all kinds of parish activitiesstudy groups youth and childrens clubs and above all in sunday schools  regrettably little is known about the women who now became involved in sunday school teaching activities fragmentary evidence implies that they were as might be expected housewives with younger children  over the coming decades however these women were less and less likely to volunteer as sunday school teachers instead they started to contribute to the bynow immensely popular weekday teaching activities such as the childrens church hour in most cases they had first attended these groups with their own children after their offspring had reached school age some of them remained to volunteer performing duties that to them still seemed fulfilling there is no contemporary estimate of how many volunteers were involved in these instructional activities official documents recommended that each group should be served not only by an organising member of the parish staff but also by a volunteer who could be a parent or a parish trainee  even though this ideal was unattainable in many parishes it suggests that somewhere between five and six hundred women acted as volunteer leaders in växjö diocese during the peak years of the late s at this point it becomes evident that the postwar mobilisation strategy was beginning to produce some unexpected results at a time when employment levels among married women was rising and when parish finances were solid it seemed only natural that women instead of working as volunteers should receive some monetary remuneration for their services what had once been a volunteer activity was transformed into a parttime job paid for by the church taxes that parishes had the right to levy on the local population until the turn of the twentyfirst century furthermore the new instructional activities such as the childrens church hour needed an organisational backbone this was provided then not by the clergy or their wives but by this new group of parttime salaried predominantly female teaching staff who stepbystep became the nexus of many parish community centres between  and  the total number of employed teachers in church of sweden parishes rose by  per cent  in växjö diocese alone there were sixty people in fulltime employment performing such duties in the final years of the s  when the century was drawing to a close their numbers had risen to   this article demonstrates how the church of sweden during the latter half of the twentieth century was able to adjust its teaching activities to changing circumstances in several successive stages first when sunday schools were declining in popularity due to changing trends in society parishes were able to both conceptualise and organise alternative instructional activities this led to an overall rise in childrens religious participation throughout the s and s by implication this suggests that the standard indices of religion should be used with some caution if figures for alternative and newlyestablished church activities are not included these sets of statistics may be misleading they may seem to signal a decline in participation when in fact the opposite was true and that growth was taking place only elsewhere second when participation in sunday schools was declining on the part of both the clergy and primary school teaching staff new groups of women were recruited to fill the vacated positions to some extent this indicates that the postwar strategy of the swedish national church was successful new lay groups were willing to engage in volunteer work an expansion of the church workforce was a precondition for the churchs achievements in the s and s thirdly the extension of its salaried female workforce during the s forced the church of sweden to make additional adjustments with the intention of recruiting a new generation of working women parishes were now forced to turn the tasks that had been seen as volunteer work into regular jobs to a considerable extent this evolution still characterises the church of sweden and sets it apart from protestant churches with a similar pedigree in for example britain germany and the other nordic countries this demonstrates the need to infuse a gender perspective into institutional history if we are to understand the postwar activities of churches and other christian groups a focus on the behaviour of women may be essential for our understanding of the demise of religion in northwestern europe  but to an equal extent for our reconsideration of postwar religious mobilisation in the western world while the modifications the church of sweden introduced around teaching the young may not have stemmed the rising tide of secularisation it may have for some time at least slowed the rate of its flow  famously and controversially argued in callum g brown the death of christian britain understanding secularisation  nd edn london 

this article offers a reconsideration of religious mobilisation in the interand postwar periods it focuses on how the church of sweden gradually altered its catechetical activities aimed at children to meet changing needs built on a range of statistical sources this article calls for a reconsideration of the ways in which larger protestant denominations adjusted to meet declining religious practices with a focus on how laypeople became involved in these efforts it is argued that institutional history rejuvenated by the introduction of a gender perspective is essential for our understanding of postwar religious mobilisation in northwestern europe a little more than ten years ago jeremy morris called for an alternative approach to the history of modern british christianity against the backdrop of overarching and hotly debated narratives of secularisation morris pointed out that ecclesiastical history in britain has never been drawn into the rich synthesis of social and demographic analysis snaa swedish national archives arninge snav swedish national archives vadstena an early version of this article was discussed at joint seminar of religious historians at the universities of glasgow and lund i am grateful for all comments offered by those taking part in this event i am also indebted to the two anonymous readers for their generous and helpful remarks dr janice holmes generously stepped in at the very last moment to shape up both language and my line of reasoning all translations in this article are the authors own

background over the past few decades childhood overweight and obesity has become increasingly prevalent around the world 1 in the netherlands overweight and obesity in children have more than doubled since 1980 in 2009 the prevalence of overweight and obese children was 128 and 18 respectively for boys and 148 and 22 respectively for girls 2 as childhood obesity is associated with serious comorbidities 3 4 5 6 and psychosocial problems 47 early treatment and prevention are important to ensuring sustained health at a later age the internationally recommended treatment of childhood obesity includes a behavioral family lifestyle intervention program with dietary and physical activity advice and a familytargeted focus in children under 12 years of age 89 however studies included in the cochrane review on interventions for treating obesity in children suggest that their success is limited in terms of addressing childhood obesity over the long term 9 furthermore the authors concluded that most studies were underpowered and were subject to high dropout rates while the two reviews referenced indicate the importance of behavioral family lifestyle intervention neither explicitly deals with the influence of the participants social network on the intervention previous research by pocok et al found that parents perceptions of healthy behaviors to prevent childhood overweight are complex and are influenced at many levels 10 furthermore intergenerational influences on parental health beliefs and knowledge suggest that health promotion strategies may be more effective if they are directed at the wider family rather than at parents alone 10 in addition christakis et al suggest that obesity may spread within social networks in a quantifiable and discernible pattern that depends on the nature of social ties 11 therefore we acknowledge that the influence of the childs social context is of importance in familytargeted interventions several studies have investigated the barriers to achieving behavior goals and participating in healthy lifestyle programs in obese adolescents 12 13 14 15 and parents of obese children 1617 as well as the factors that facilitate this examples of barriers mentioned include the stigma associated with overweight or obesity unsafe neighborhood in which to engage in physical activity lack and inconvenient location of available health services broader social family barriers as well as time and financial costs facilitators mentioned include the subsidization of program costs enhancement of motivation for adolescents and parents ongoing follow up treatment offered at convenient locations on a schoolfriendly schedule and family involvement however these studies did not take the expectations of the child and parents into account qualitative studies of young overweight or obese children and their parents that are participating in a behavioral family lifestyle intervention program are scarce in their systematic review lachal et al highlight the value of qualitative studies in increasing our understanding of the experience of the obese child 15 in order to improve and optimize future behavioral family lifestyle intervention programs a greater understanding of the perceptions of obese children and their parents is required as indicated by previous research the influence of social factors family expectations and the capacity of families to change behavior in response to childhood obesity treatment have not yet been properly studied with these recommendations in mind the aim of our qualitative study is to acquire more insight into the perceptions of parents and children with regard to their expectations of and experiences in lifestyle interventions and the influence of the social context and social factors on these interventions methods we used the consolidated criteria for reporting qualitative research to describe our methods 18 these criteria describe three domains 1 research team and reflexivity 2 study design and 3 analysis and findings design a qualitative study was conducted on the basis of semistructured interviews interviewees were selected from three different lifestyle intervention programs carried out in different settings in the northwestern region of the netherlands the interventions varied between an extra consultation and a 6 or 9 month lifestyle programs with weekly sessions under the supervision of a physiotherapist or dietician participation in the interventions was initiated either by a referral from a school nursedoctor general practitioner or pediatrician or by the participant him or herself all three programs were designed to alter lifestyle behavior by changing eating habits or physical activity and prevent additional weight gain in all programs parents were actively involved either during consultations or during separate parent sessions the aim of the study was to obtain information from a varied group of obese children and their parents to gain insight into their individual experiences the medical ethical committee of the vu university medical center approved the study protocol participants and procedures in the youth health care setting overweight and obese children and their parents received an informal facetoface invitation to participate in the study by the school nurse during or after a consultation fifteen parents of overweight or obese children from a primary health centre and eight parents of overweight or obese children from a hospital paediatric department received a letter inviting them to participate within 1 year of the start of the lifestyle program sufficient knowledge of the dutch language was used as a selection criterion when inviting parents and their children to participate the majority of the participating children in the three interventions were between 4 and 12 years of age children were asked to participate by their parents as an incentive each participating family received a 10euro gift voucher based on the literature the research team developed an interview guide and observational protocol with a main focus on the expectations and needs of overweight and obese children and their parents the factors that facilitate success in the programs as well as the barriers they face examples of questions asked include what were your expectations of the program and how did you implement the lessons you learned in your daily life and which elements motivated you and which did not after an evaluation of the first two interviews increased attention was devoted to the possible supporting role of the general practitioner in a lifestyle intervention program data collection data collection took place between january and may 2010 two researchers who are trained vocationally in general practice conducted the interviews one of the researchers who was primarily responsible for the interviews participated in a course on qualitative research and provided instruction to the other interviewer all data codersanalysts were trained in qualitative research children and parents were interviewed during the day at home the child was always the first to be interviewed we tried to interview the child and parent separately in some cases this was not possible because some children did not want to be interviewed alone and in some instances the parents were not able to sit in another room when both parents participated in the interview they were interviewed together to increase confidence each interview with a child started with a general question regarding their experiences at school at the end of the interview the interviewer checked whether or not all topics had been covered 19 each interview with the parent or child lasted between 30 and 60 min we continued interviewing until no new information emerged all interviews were audio recorded and transcribed verbatim written and verbal consent were obtained from the child and at least one parent which also covered the recording and transcription of generated data in addition demographic information and field notesobservations were made at each interview data analysis transcripts were coded thematically to systematically analyze the data using the atlasti 52 software package first open coding was conducted this involved reading and rereading the transcripts and grouping data into text segments two researchers independently checked for coding consistency and reached a consensus on a preliminary set of codes for further analysis grouped data was compared to explore thematic patterns using a matrix to increase interobserver reliability transcripts were then reread and themes and interpretations were critically discussed by five members of the research team the primary themes that emerged from the analysis were expectations parenting social context and needs the final step in the analysis was the discussion of these findings by as and mw and the identification of possible explanations the participants did not provide feedback on the findings results participantfamily characteristics themes the following themes expectations barriers and facilitators in terms of parenting and social context and needs are described additional file 1 table s3 provides indepth information per interviewed family a brief summary of the aforementioned issues present in each family is included expectations all parents and children involved at the level of the primary health centre or hospital programs expected to lose weight in the lifestyle program by being physically active and learning about healthy food more than half of the parents and children who were in the youth health care group mentioned expectations no differences in expectations were found between parents and children involved in a lifestyle program for the first time as compared to the more experienced parents and children my idea was that she would exercise and do sports and receive consultations from the dietician and after a month i would see my daughter slim but unfortunately that did not happen parents and children expressed hope that bullying would stop due to weight loss i want to have a healthy child my child stopped playing football on the street he was being bullied because he could not run due to his weight i dont want him being bullied because of his weight although parents and children expected their child to lose weight not everybody managed to do so during or after completion of the lifestyle program moreover some mentioned high dropout rates during the program at the start more children were present than at the end it was unclear why these children did not finish i think it was only my daughter that lost weight because she was the only one who received a certificate parents and children indicated the lessons they learned in establishing and adhering to rules to change the childs lifestyle behavior they mentioned their daily routine and eating pattern as being one of the things they had to change by eating breakfast on a regular basis for example i dont like to get up in the morning i have to get dressed brush my teeth wash my face … you have to go to school again and learn things i only like to see my friends so after getting up i have to comb my hair and watch tv for 10 min sometimes i dont eat breakfast because i wake up too late since the program ive been trying to eat breakfast more often i always have to eat breakfast alone because my mom and sister leave the house at 730 am and my dad leaves at 530 am barriers and facilitators parenting and the social context were the two areas in which barriers and facilitators were experienced 1 parenting parents struggled most with the introduction of new rules they experienced difficulties with being consistent and dealing with the continuous conflicts with their child while trying to adhere to the rules it is hard when my child doesnt listen to me and doesnt want to eat any fruit for mothers the conflicts with their child were particularly hard to deal with as they did not get support from their partner according to my husband there was no need for this program he thinks it is all nonsense in addition to the issues described above mothers mentioned their own struggles with temptation to eat unhealthy food such as sweets and chips and the difficulty associated with preventing their child from eating these items during the day he has no appetite and then at night he is hungry and ill make sandwiches for him because i feel sorry for him … in the past i set the wrong example because i would eat at irregular hours so he saw me eating and then he wanted to have something too i gave him everything and the portions kept getting bigger … we have to do it together but it was difficult … during the program my husband was abroad and i had to do it myself the new rules were difficult for parents to apply during visits from family members who expected a lot of tasty and largely unhealthy food which violated the new rules it was difficult to prohibit the eating of unhealthy food in these situations interviewer who are the key people that should tackle the weight problemrespondent i hope my wife with cooking my parents they live next to us they have changed a little bit my son gets everything he asks for from his grandfather his grandfather loves him he is the first grandchild parents also indicated that tempting advertisements for snacks candy and soft drinks did not help the children adhere to the rules then there is an advertisement for candy then one for icecream and children want to try everything it is hard to deal with the media overweight parents found it easier to be consistent in their parenting when they had insight into the emotional consequences of being an overweight child based on their own experience in their youths according to the children the new rules introduced by their parents were inconsistent eg rules existed for using the pc but not for watching tv they were not allowed to eat candy after four oclock but they had ice cream for dessert children indicated that it was difficult to stick to the rules when soft drinks and chips were available in the house the support of their parents in terms of reminding them not to eat unhealthy food and to go outside and play helped children to overcome these problems it helps me when my mother says go out outside to play and stop watching tv my father and i are alike and i also eat too much so now we do sports together and ive changed my portion size just like my father did because it helped him 2 the social context in their social context parents and children struggled with the new rules as well it was difficult to prohibit unhealthy food when the child visited family members who gave the child food that was restricted at home i try to change food habits at home but then i visit my mother and all the unhealthy food is present it remains difficult i would have to change the my relatives behavior but thats impossible when parents lacked support from their own family members they benefitted from receiving support from other parents in the lifestyle program examples of experienced support given include recognition sharing of successes exchanging experiences and sharing tips and tricks for raising children parents felt more confident when they received support from their peers in an effort to create a forum for this type of support one parent created a social network site at the end of one of the lifestyle programs it is really important to speak to other parents during the evaluation we also agreed that more parent meetings should be planned the support you get starts when you get to know each other in the program … it is important to know you are not the only one and to hear that other parents are also dealing with problems for me it was enlightening and surprising to find out how long children watched tv or played computer games because that was not an issue for us … and when things are not going very well you can discuss this with each other in cases in which the parents were informed that their obese child was being bullied at school they indicated being motivated to support their child losing weight schools could be more supportive of the new rules regarding healthy food by choosing healthy treats children struggled at school with being bullied and dealing with slim peers this made it difficult to change their lifestyle behavior they also indicated the existence of a stigma associated with being overweight for example some felt embarrassed by their body during swimming lessons children experienced other problems with friends mainly slim friends related to the difficulty of saying no to candy or energy drinks that friends would bring along on the other hand friends and peers could help stimulate change some received support from their friends mainly overweight friends by talking about the problems they experienced the same support was experienced by the peers in the program and was brought about by a feeling of equality needs parents realized that changing lifestyle behavior requires a continuation of the program it is hard to maintain the changes because after the program there is no reminder anymore you miss the feedback that you are on the right track one solution mentioned by parents to tackle this problem is the continued involvement of the general practitioner the general practitioner should play an active role not only in signalling the weight problem in time but also in offering ongoing support it would have been nice if the gp would have asked how we were doing during the program that would have been an extra stimulant for him another need mentioned was financial support parents indicated that financial problems impede lifestyle behavior change similarly they identified the need to be made aware of cheap sports facilities nearby children identified a need for the support of the general practitioner in identifying the weight problem in time in a nonoffensive manner and specifically in providing information on the longterm consequences of obesity discussion in this study the expectations and needs of overweight and obese children and their parents and the factors that facilitate and prevent success in making and sustaining lifestyle behavior changes were explored the results show that parents and overweight and obese children themselves expected that they would lose weight by being physically active or by eating more healthily barriers to a healthylifestyle were associated with parenting problems specifically pertaining to the adoption of and adherence to new rules both parents and children lacked support from their family members within their social context children struggled with being bullied at school for both parents and children support from peers is encouraging to maintain lifestyle behavior change overweight and obese children and their parents need support from their family school friends peers and their general practitioner the general practitioner should play a role in identifying weight problems in time discussing weight in a nonoffensive manner and providing information on the longterm consequences of obesity overweight and obese children and their parents participating in this research project indicated the same barriers to behavioral change as other recent studies have 12 13 14 15 16 17 namely parenting difficulties with other family members duration of the intervention and bullying in addition factors that facilitated making lifestyle behavior changes included the positive involvement of parents and the utility of continuing the program parents expected their child to lose weight by being more physically active and by learning more about healthy food the primary goal of the three programs was to change the participants lifestyle behavior by changing their diet and instilling in them an appreciation for being physically active and to prevent further weight gain some children and parents were disappointed that they did not lose weight and withdrew from the program as a consequence previous research involved the conducting of a survey of respondents from a tertiary care weight management centre and found that parents mismatched expectations were important reasons for attrition 20 it can be speculated that when participant expectations and program goals are better coordinated the motivation of the participants will increase leading to a reduction in dropout rates and eventually greater longterm success in our study for both children and parents the main barrier was to set and maintain rules inconsistent parenting was a problem especially for children it is known that parenting styles are an important factor determining a childs health 2122 parents play an important role in stimulating healthy eating behavior in their children 23 in previous research on obese adolescents the intention to reduce weight was interfered with by quarrels with parents selfblame and misguided understanding of eating and exercising habits 24 similarly previous research reported that recognizing family behavior is essential in the development of weight control and weight loss activities 25 as in our study almost all children and parents that were motivated to change eating patterns succeeded in achieving weight loss in contrast it was hard for the children with unmotivated parents to establish a change furthermore the childs commitment to weight loss and the support of his or her family has been identified as being important to successful weight loss 26 another barrier was dealing with advertisements for unhealthy food it is known that food advertisements contribute to an obesitypromoting environment 27 fortunately many countries are now establishing new regulations on advertising directed toward children on tv and many government health agencies are now issuing recommendations for parents regarding the amount of time children spend watching tv 28 in their social context the extended family impeded progress from the standpoint of the parents in line with previous research the involvement of the wider family and social network of participants is important to the success of the intervention 1011 peers were sources of support for both parents and children as has been shown in previous research peers can increase a participants motivation to be physically active 29 a barrier experienced by the children was bullying at school previous research has concluded that bullying is significantly associated with low selfesteem in overweight children 3031 in order to maintain lifestyle behavior change on the long term parents and children mentioned the need for the support of the general practitioner previous research has shown that primary care is an appropriate setting in which to treat childhood obesity 32 parents of obese children were reluctant to consult a general practitioner due to a fear of being blamed for their childs weight problem and concern about their childs mental wellbeing 32 in a recent systematic review and metaanalysis a small effect size of behavioral family lifestyle interventions was shown 8 in 19 of the 20 studies included the same age group was used and on the basis of 18 studies we were able to gather information on the background of the given interventions in 15 interventions the family was involved in the intervention three interventions focused only on the parents in only two studies was special attention given to the expectations of the participant furthermore only two studies dealt with social context by sharing tips with other parents and discussing barriers in the environment in only one study did the general practitioner participate in the intervention the current study has some limitations our aim was to interview children and parents separately but in fifteen interviews the parents and children were interviewed together this may have influenced what children were willing to say in front of their parents however we experienced that parents were in fact supportive in terms of helping the children with providing examples of experiences in the lifestyle program another limitation is the unknown recruitment rate from the youth health center however the recruiting school nurses were asked to pay special attention to recruiting respondents with variability in age gender ethnicity differences in lifestyle setting and weight loss success half of the families invited from the other two lifestyle programs participated the participating families have characteristics that are representative of the greater population in which obesity is common however generalizability is limited to the one region included in the study a strength of the study is the participation of children and parents from different types of interventions and xsettings we paid special attention to the differences between the three interventions and while interpreting the results we only found substantial differences in the expectations between parents and children of the yhc intervention and the other two interventions this was to be anticipated since not all parents and children knew in advance that an intervention would take place the setting and type of intervention seemed not to be particularly important since the same perspectives were identified by both parents and children our results underline the importance of paying attention to the expectations of the participants and discussing barriers and facilitators within the entire social context during an intervention it is recommended that clinical practice actively inform general practitioners of participants involvement in a lifestyle program in order to maintain behavioral change after the program is completed future research would benefit from qualitatively evaluating childrens and parents experiences with lifestyle programs to improve their adoption and implementation 33 we can conclude that parents and children need parenting support and help from their family and social context when attempting to make lifestyle behavior changes the general practitioner should play a more supportive role additional files additional file 1 table s1 interview guide table s2 observation protocol table s3 themes and summary per family abbreviations coreq consolidated criteria for reporting qualitative research competing interest the authors declare that they have no competing interests

background in order to improve and optimize future behavioral family lifestyle intervention programs more information on the perceptions of obese children and their parents of these programs is needed as such the aim of this qualitative study is 1 to explore the expectations of obese children and their parents in relation to lifestyle interventions 2 to identify barriers to making lifestyle changes that parents and children face within their social context within the family at school and amongst friends and peers as well as the things that facilitate these changes and 3 to identify the needs of obese children and their parents in the context of a lifestyle intervention methods a qualitative study using semistructured interviews was conducted interviewees were participants in a lifestyle intervention program in the netherlands results eighteen children mean age 10 years and 24 parents were interviewed the respondents expected to lose weight by being physically active or by eating healthily parents struggled with adopting and adhering to new rules and the absence of support of family members children struggled with inconsistent parenting and a lack of support from their parents bullying experienced at school impeded the children in their ability to make the necessary changes support from peers on the other hand stimulated their progress parents identified the need for the general practitioner to discuss overweight in a nonoffensive way and to show an interest in the process of weight loss conclusions participants in a lifestyle behavior intervention program benefit from parental support and help from their extended family peers and friends they would also profit from the sustained involvement of their general practitioner in assisting in the maintenance of lifestyle behavior changes

book reviews bijdragen tot de taal landen volkenkunde 179 275309 characters the author also amassed 30 images of bong pai and sin ci containing his familial lineage while the author has put together the book in two years as said in the foreword the project actually started much earlier as a young teenager hongsienwhose family had then recently migrated from malang to amsterdamwas handed a piece of paper by his father kwee tat kien on it was their kwee family tree neatly typed by his grandfather kwee tjoen liat in 1956 the book also contains a wide selection of documentation ranging from deeds wedding announcements and citizenship certificates to media clips the latter contains flattering news such as the knighting of greatgreat grandfather kwee sik poo by the dutch government in 1911 but there are also less savory ones like a clip headlined the fugitive millionaire referring to maternal grandfather the tik gwan who fled to europe for tax evasion some are unintentionally interesting like one from the indische courant of june 4 1935 listing students from malangs ursulinen teacher training course including the authors aunt the list however showed that out of a class of 27 there were only three chinese names and one javanese namethe rest were all dutch surnames some of the chinese indonesian family history books that have come out in the netherlands vary in scope and tone not many authors have the writers flair of physician yap kioe bing who packed history suspense and melancholy into the compact biography of his father oei hong kians autobiography was more ambitious in scope and in parts read like an attempt at a historical novel patricia tjiookliem wrote her family history through the lens of her greatgrandfather and at the same time gave an overview of peranakan chinese life in semarang a major port and trading city since the early years of dutch presence in the indonesian archipelago tjiookliem is founder and chairperson of the chinese indonesian heritage center set up in 2011 with the support of the royal netherlands institute of southeast asian and caribbean studies an academically solid publication was a volume that looked into the kwee family of west java written by two historians with no family ties to their subjects finally a good overview is given by the compilation of 50 short family histories told through 50 photographs encompassing chinese indonesian experiences throughout the archipelago and beyond that in china the netherlands and suriname compared to the above publications kwee hong siens book should be viewed more as a workinprogress in the book he invites readers numerous times to send him more information it is difficult to gauge how many similar projects like kwee hongsiens have been done within family circles outside of the public eye there should be a way to make these projects accessible beydownloaded from brillcom 05072024 043732pm via open access this is an open access article distributed under the terms of the cc by 40 license ond the families as these works contain a wealth of information invaluable for future historical studies linawati sidarto independent journalist amsterdam the netherlands

online this is an open access article distributed under the terms of the cc by 40 license kwee hongsien history of the han kwee and the families from pasuruan and surabaya kortenhoef selfpublished 2022 364 pp no isbn and price paperback while chinese indonesians were an integral albeit small part of the dutch east indies community for centuries very little has been published in the netherlands about this migrant group in contrast to other communities originating from former dutch coloniesmoluccans indoeuropeans papuans surinamese to name a fewchinese indonesians have been practically invisible in dutch society thus although it is unusual to review a selfpublished family chronicle like the book of hongsien kwee there are a number of reasons why it is worth discussing the 364page book gives an overview of kwees heritage through three families whose forefathers emigrated from fujianlike most of the chinese who settled in southeast asiato java in the eighteenth century the kwees are from his fathers lineage while his paternal and maternal grandmothers are respectively descendants of the the and han families they settled in east java and some of them became prominent figures in their communities and in the sugar business around the turn of the twentieth century the dutch east indies was one of the worlds main sugar producers once readers can go beyond the books rather jumbled layoutkeeping in mind that it was published for the authors extended family instead of the general publicthey can delve into a treasure trove of information first of all the story of the kwees hans and thes reflects the history of the peranakan chinese who settled in java numbering in the hundreds of thousands by the early twentieth century the copious volume of imagesnot organized chronologicallyare a dizzying yet connecting thread of the families generational journeys through time and geography there are pages with photos of han family members with the royal family of solo next to images of the same hans clearly somewhere in the netherlands pp 100101 two adjacent pages can have blackandwhite family photos taken in east java in the middle of the twentieth century next to color photos taken more than half a century later with more generations posing in their home in the netherlands pp 262263 these pictures which include some grand family homes still standing today are witnesses of the cultural mix which is at the base of the peranakan community and the migration flow of some of them to the netherlands a country far away yet familiar to them due to centuries of colonialism hongsien kwee took the genealogy part of his book very seriously 26 pages were devoted to the kwee han and the family trees from their first arrival in java all the way until the current generation for those able to read chinese

introduction sexual health is an important aspect of a growing adolescent 1 a healthy sexual life can contribute to a healthy body peace of mind and positive and respectful relationships throughout ones life 2 the world health organization defines sexual health as a state of mental physical and social wellbeing relative to sexuality it requires a respectful and positive approach to sexuality and sexual relationships as well as the possibility of having pleasurable and nonviolent sexual experiences free of coercion and judgment sexuality is conveyed and expressed in many ways such as in fantasies beliefs thoughts attitudes relationships behavior practice and gendered roles 3 sexuality encompasses the dimensional growth of a persons physical mental and social behavior therefore all children have the right to be adequately informed about sex and sexuality 4 all children and adolescents with intellectual disabilities should receive appropriate sex education suited to their comprehension levels 56 malaysia is a society that is governed by traditions in which children accumulate significant knowledge in their life through their everyday experience from their environments and social and cultural norms they have a limited perspective on the gist of sexuality and se owing to cultural customs and a limited conceptual understanding of religious beliefs sexuality is considered any behavior connected to sexual intercourse 78 therefore the majority of malaysian parents do not discuss sexuality or sexrelated or body functions with their children in an open and frank discussion an earlier study involving adolescents with disabilities revealed that their parents did not openly discuss sexuality and they preferred sharing concerns with a colleague 9 similarly research indicate that most malaysian parents reared in culturally conservative surroundings have a negative view of their childrens sexual awareness 10 in malaysia se is informally taught to malay children in terms of appropriate personality traits and desirable behaviorto behave in feminine ways for girls and masculine ways for boys around four years of age 11 they are also taught that there are topics that cannot be talked about including sexual intercourse private body parts and sexual bodily functions 12 islamic teachers teach se when the children approach teenage years mainly on menstruation issues dress code and avoiding immoral activities or illegal conduct topics according to the law of the country and social norms of the community they have also been taught about signs of akil baligh for girls and for boys it is important for them to know about these signs akil baligh is a term used in islamic legal terminology to indicate someone who has achieved puberty and is fully responsible under islamic law when the person approaches the end of their teenage years or prior to marriage the roles and rights of a married couple are taught in formal munakahat classes or workshop classes 13 this is made possible by the law that requires all muslims applying for marriage in malaysia to have a certificate of having completed this course 14 formal se is not easily implemented in the malaysian school curriculum the government started to integrate se into the national curriculum for secondary schools in 1989 while for primary schools it was started five years later the se module was integrated into various academic subjects such as in human science islamic education languages and moral education 15 however the implementation creates debates among society up to the scholars level partly due to the incomplete training of the teachers who are supposed to handle the topics 15 after taking into consideration the sensitivity of the topic in the community the se module has been renamed to become reproductive health and social education or pendidikan kesihatan reproduktif dan sosial in 2011 and delivered as a part of the health education subject 15 despite these efforts reported misconduct among school children with id persist lack of understanding among the parents about the implementation of se at school was found to be one of the reasons causing the low effectiveness of the program to educate special needs children in this matter 15 se for students with learning disabilities has not been implemented formally 16 se is still a controversial and sensitive topic 16 thus individuals with id receive less information about se as malaysian culture believes that students with disabilities should be shielded from everything connected to sexuality owing to their paucity of maturity and intellectual comprehension of the topic 16 sexuality issues of persons with id are still misjudged by society even though this group exhibits comparable sexual desires akin to the general population 16 these urges drive them to be attracted to sexual partners and engage in romantic relationships and sexual activities 6 some parents are unwilling to view their children with id as sexual beings a study showed that parents with children who have id are less likely to perceive their children engaging in sexual acts during their adolescence however they still believe that providing se to their children is a must 17 in another study all mothers ignored se for their children due to the belief that their children with id should not have a sex life 18 globally epidemiological research shows that id affects about 1 of the population 19 as of 2020 there are about 20300 new cases of children with disability registered with the department of social welfare in malaysia 20 however there are no accessible data on the prevalence of children with id in malaysia 20 malaysia has 282 of children under the age of 18 in 2020 or 9247500 children out of a population of 327 million male children outnumber female children kelantan has the third largest proportion of children under the age of 18 at 352 20 intellectual disability is characterized by deficits in mental capabilities that impede adaptive functioning in three domains social conceptual and practical these deficits emerge throughout the developmental stage 21 several neurodevelopmental disorders or medical diseases coexist with id in individuals including autism spectrum disorder attention deficit hyperactivity disorder or disorders such as cerebral palsy 22 asd which has a comparable prevalence to id is defined by a deficit in social interaction and communication restricted interests and repetitive behaviors at least 25 of children with asd also have id 23 genetic factors also play a significant role in id the most common chromosomal abnormality associated with an id is down syndrome there are a lot of health concerns that arise due to limited knowledge of se children with id are vulnerable to sexual abuse they suffer from sexual abuse more often than their ablebodied and ableminded peers furthermore most cases of abuse happen repetitively within the close social environment of the victims 24 by providing se to them they will be aware of situations that threaten their safety exposing them to appropriately planned sex education at an early age can help them live in secure and safe environments 5 parents play a pivotal role in providing children with se children rely entirely on their parents for information from an early age it is necessary and fundamental to form a partnership with parents and develop mutual understanding and responsibility for childrens success in the educational system 15 a review of the relevant literature particularly in malaysia reveals that this topic is underexplored very little is known about parental understanding regarding sexuality and interaction elements that influence their behavior in providing se to their children with id the reviewed study focused mostly on the perspectives of educators or on parents of ablebodied adolescents 25 thus this qualitative study aimed to explore mothers understanding and experiences related to sexuality issues among their children with id it is essential to explore parental engagement in the delivery of se to empirically identify parental knowledge abilities and the challenges related to se to plan for future intervention based on the concept that approaches to se and sex education can be learned regulated and motivated we chose social cognitive theory as a base of our research framework and guidance for method and data analysis presented our findings and provided direction for future research 26 human behavior can affect or be affected by both environmental and personal factors all these three factors are interrelated as shown in figure 1 the sct identifies three major interacting factors that have a bidirectional impact on mothers outcomes personal environmental and behavioral 26 this twoway interaction is shown in the reciprocal triad interaction model where people can create their own environmentwhat sexuality meant to them how important se is to their children and their selfbelief on this issue people can be affected by external environmental stimuli such as the way they perceived islamic teaching and adat related to the sexuality the ability of their child to accept se as well as supports and barriers they may experience and people can also make choices about whether or not to proceed with actions such as educating their id children on this topic 27 the strength of any influence differs between people and events the three elements of the reciprocal triad include the environmental factors which include culture religion politics laws etc the personal factors which include cognition such as selfefficacy and outcome expectancy emotions and physical appearance and behaviors which include actions verbalizations and decisions this theory is particularly helpful to comprehend major significant interactional relationships between the different factors that influence mothers perceptions of their childrens sexuality and behavior about providing se which is the aim of our research materials and methods this study was conducted using a qualitative method wherein indepth interviews with a phenomenological approach were used to explore mothers views on sexuality and sex education for their children with id the qualitative method enables the researcher to study selected issues comprehensively without being constrained by predetermined categories of analysis and allows the participants to voice their opinions 28 the phenomenological approach allows the researcher to delve into the perceptions perspectives understandings and feelings of mothers who have experienced the sexuality phenomenon with their children with id by describing what and how they experienced it 29 parents of children with id at age 1019 years and able to communicate well in malay were included in this study settings this study was carried out in kota bharu kelantan a suburban state in peninsular malaysias northeast the kelantanese malay people are the states majority ethnic group accounting for 94 of the states population and are muslim 30 procedure this study used facetoface and indepth interview techniques 19 the interviewer was a female family medicine trainee with no prior relationship to the participants 22 on the day of the interview consent was obtained from participants before the interview then participants were asked to fill in the sociodemographic form the interview session began once they completed the form using a semistructured questionnaire this study was conducted in the participants native language to enable participants to share their views and experiences comfortably and allow the researcher to grasp subtle and concealed nuances in the participants utterances the questions were openended clear and understandable conforming to sct we began by asking the participants the following key questions from your experience what does sexuality mean what is your view about sexuality in your children and how do you provide sex education to your children we also questioned how they saw their children as sexual beings the gendered role as assigned and how they conveyed se to their child with id as compared with their ablebodied siblings these were then followed by more specific questions ending before ending this interview is there anything else that you want to add comment or share asking their hopes recommendations advice or sharing words about this issue with other parents with id children thank you the time frame for the interviews was flexible and most usually took around 60 min the interview took place at a convenient quiet location that was free from distraction either at a hospital during followup or at the childrens communitybased rehab center or anywhere they preferred all the interviews were audiorecorded stored in a safe place transcribed into text and analyzed later a pilot study among three mothers was conducted with senior coresearchers who were experts in the qualitative study prior to the actual study to test the validity acceptability and suitability of the questionnaire data analysis the interviews which were audiotaped were transcribed verbatim then they were entered in nvivo software for coding thematic analysis was used to extract pertinent themes in this study from the transcribed text to begin the three researchers reread the first five transcripts attentively to become acquainted with the mothers overall ideas and viewpoints following that the primary researcher generated an initial list of codes in nvivo ® and we coded the transcripts in a meaningful and systematic way we first looked at each transcript individually before grouping the discovered themes to create an overall group analysis and arranging them into an interrelated structure to ensure validity reliability and coding correctness the research supervisors checked all interview transcripts codes with the primary researcher any conceptual disagreements about thematic analysis were reviewed and modified and other preliminary themes were created additionally a coresearcher with interest in childrens sexuality reviewed and discussed the coding and preliminary themes for all transcripts together to provide general constructive comments finally the study team achieved agreement on the final codes as well as on the themes subthemes and axial coding the transcribed text was emailed to be read by selected participants to validate the findings any different possible interpretations were discussed none of them disagreed with these findings results characteristics of the participants twentythree eligible mothers were contacted by phone however three were unable to participate due to scheduling difficulties twenty malay mothers of adolescents with id took part in this research table 2 describes the characteristics of the mothers involved the mean age of the mothers was 488 years the majority of them were married more than half had a secondary level of education and were homemakers the mean age of the children was 154 years with an equally distributed representative from young middle and late adolescents the majority of them were male with half of the adolescents having id and ds onefifth had asd and onethird of them had mixed diagnoses most mothers had three other ablebodied children themes three primary themes emerged from the mothers experiences sexuality as erotic experience and life perceived their childrens sexual maturity as different and caution in providing sex education sct and phenomenology explained the experience of these mothers on their meanings of sexuality and understanding of se the analysis showed the influence of cognitive and behavioral factors on how mothers provide se to their child with id this interaction can be clearly seen through the themes below theme 1 sexuality as erotic experience in life when we asked what sexuality means to them the researcher discovered that all 20 mothers had varying perspectives about sexuality the individuals interpretations of sexuality were influenced by personal understanding sociocultural beliefs and sociocultural environmental influences some mothers understood sexuality in terms of personal relationships and its connection to marriage while others took a more holistic approach the culture and the religion of malays show how this construct can mold the experience of sexuality in malay mothers as many claimed sexuality is confined to intimate relationships • sexuality is an intimate relationship many mothers were just not sure of what sexuality is on further questioning some regarded it as something that might be akin to sexual intimacy while others asserted that it is about marriage nine mothers equated sexuality with sexual intimacy p10 said sexuality encompassed sexually intimate relationships which then were fueled with sexual desire and resulted in sexual intercourse even she had previously read about sexuality on social media or seen it on television sexuality to her refers to sexual intercourse sexuality is how to say it is about the sex of that person those teenagers have some desire which is more to sexual need itself despite being unsure of the meanings three mothers described sexuality as related to the inclination to become married and legitimize what is generally forbidden in religion according to p11 when men and women share a particular feeling the relationships overall purpose is marriage once they are married men and women are free to do anything they desire as the partnership is deemed halal in islam in islam halal refers to what is permissible under islamic law its probably related to the marriage wishes it might be something that has to do between men and women it refers to their personal needs which also want to get married and so on similarly p17 viewed sexuality as an emotional bond between two people that will eventually lead to marriage during the interview she referred to the phrase find another life partner as marry following their marriage they are permitted to engage in sexual activity and sexual intercourse it means the feelings as much as people said those are our emotions that are connected to each other err it is more to find another life partner its like that yes it also means the relationship will go further it will lead to intimacy and sexual interaction the majority of mothers who have a little understanding of sexuality are mostly homemakers with a lowtomoderate level of education while some of them s knowledge on sexuality via reading watching television or surfing social media they could not adequately define the term • sexuality is a part of sexual being while most mothers defined sexuality as intimacy six educated mothers particularly those working in the medical line described sexuality beyond sexual intercourse and heterosexual relationships sexuality encompassed all aspects of life which include sexual development sexual orientation gender identity physical and emotional intimacy and reproduction p2 shared her views below sexuality means about body organs related to reproduction err which part you can touch and which part you cant how the process happens inside like biological physiological processes it is not about sex whats the difference between a man and woman it also indicates the process of puberty if a woman it is about the menstrual cycle and more the pregnancy processes what will change when they become teenagers another mother p9 expanded the meaning of sexuality beyond physicality it includes emotions and the effect of sexual behaviors among teenagers it is also about our biological sexanatomical parts of our bodies gender identities either you are a boy or girl and the boundaries or limitations of association between girls and boys the ability to have any emotional expression what is sex and the consequences of sexual activity sexuality encompasses all aspects of life • uncertain meanings however two mothers did not comprehend what sexuality is or were still confused about the concept of sexuality they asserted that they were unsure of the concept of sexuality due to a lack of exposure to information regarding the same in the past and a lack of conversation about sexuality among family and friends p5 among the two mothers overheard friends conversation by chance regarding sexuality but never asked or interrupted to find out the details she is a stayathome mother with a low educational background her life revolves solely around her children and spouse even though the topic was less sensitive to her she made no attempt to discuss it with friends or family i dont understand ive heard from my friends but i dont have any idea whats it all about 322 theme 2 perceived their childrens sexual maturity as different mothers perceived their childrens sexuality through a variety of lenses according to what they have gone through in the past their educational levels and how they understand sexuality from culture and religion perspectives nineteen mothers stated that their childrens sexuality is emerging but from a different perspective sexual attraction viewing of pornographic material selfstimulation and expressing a desire to have sex are all examples of sexual behaviors displayed by their children which sometimes go unnoticed by the parents mothers of boys reported observing morning erections and nocturnal emissions however they felt that the development of sexual behaviors is delayed compared with their ablebodied children while a few were unaware of these changes • unrecognized childrens sexual maturity a few mothers did not anticipate their children to show sexual behaviors they were unaware that their children had previously experienced sexual development as similar to other siblings only when the researcher raised questions or prompted the mothers did they recall an event that happened in their childrens life as they lack the focus and failed to observe their childrens sexual development since this is something which is not commonly done in the community especially in children with id for example p2 realized her childs sexual desire when he saw a picture that depicted kissing when he looked at the kissing photo he showed some responses that means he must know something right in fact one day her son informed her that he had accidentally seen a nude girl online someone on youtube suggested he looked up nudist while playing an online game her son became acquainted with him she was concerned that this move might have enhanced her sons sexual desires the mother was then asked about her sons responses after seeing the video he said that the girl was naked but he also told me he could not see her much i do not really understand it i did not look at his response when he saw that because he did tell me after he was done i thought that he said it to me because he wanted me to know and he then closed that channel the mother believed that he had no intention of seeing that naked woman until that moment the mother did not acknowledge the sexual urges that were present in her child she confessed her sons naivety he would never engage in a behavior deemed inappropriate by society pornography and nakedness are regarded as immoral in malay culture and haram in the islamic faith the mother is concerned that her sons sexual urges would break religious laws and be deemed unacceptable in cultural beliefs despite the denial of her sons sexual maturation and behavioral changes that occurred during adolescence another mother p3 recalled one event that occurred during her sons puberty this improper sexual behavior at school was brought to the teachers attention the teacher called me and said my son wanted to go to the toilet the toilet was on the other side so he went there a girl was already inside the male toilet he said that he wanted to pee but that girl refused to go out he tried to open his pants because he could not hold it anymore but the teacher saw him at that moment then the teacher claimed that he wanted to touch that girl when she asked her son to clarify the accusation the son confessed to her that he behaved like that because he was experiencing arousal at the moment the mother then realized that her son like other ablebodied adolescents displayed sexual urges at this age similarly mother p15 saw her daughters habit of placing something between her private parts while lying down initially she believed the habit was for her comfort but her mother subsequently surmised that her daughter was indulging in such behavior to satiate lustful urges this habit emerged as the girl reached puberty in the mothers eyes sexually explicit occurrences were often deemed unsuitable or unpleasant in children with disabilities as a consequence it is possible that when their children display changes in sexual behavior the parents do not notice • expecting delay in childrens sexual maturity the association that the mothers established between environmental factors in viewing their childrens sexuality was reinforced when asking about their children with ids sexual development some mothers expressed that their childrens sexuality might be delayed in comparison with ablebodied teenage development especially in nonphysical sexual maturity emotional sexual development such as engaging in a romantic and sexual relationship or falling in love is one of the examples of their childrens nonphysical maturity seven mothers out of twenty reported that their children had an emotional attraction to the other gender the majority of children showed their interest in the other gender between the ages of 11 and 12 in contrast p1 confessed that her son had never shown interest in girls at this age however he did not have interest to become friends with any girl he didnt feel it his social life is quite challenging so from his interactions among girls and boys he would prefer to be closer to the boys as he never mentioned any of his girlfriends never heard of it similarly p2 said that her son did not tell her about a girl he liked at school she said that when she teased him about whether he likes or dislikes that girl her son clearly did not understand it in terms of feeling i never heard him mention his feelings toward other girls never heard of it on the other hand a few mothers were more concerned about the signs of puberty in their children for example mother p15 out of her curiosity took an action to confirm the maturity status of her son she regularly checks her sons mattress in the morning to see whether or not he has attained akil baligh just because he got circumcised at the age of 12 and now hes 19 ive never found any semen on the mattress i have to observe frequently as an islamic teacher told me that he is very special because he does not have a desire for sex i felt so relieved until today i always ask my other children whether aiman has reached puberty or not in terms of his voice it is already changed but in terms of a wet dream theres no sign yet one week following the interview the mother contacted the researcher to inform that she found semen on her childs bedding that morning she was overjoyed since her son in terms of maturity growth is comparable to an ablebodied adolescent even though slightly delayed wet dreaming or nocturnal emissions were longawaited in the boy and one of akil balighs signs similarly p19 was anticipating a similar event in her sons life after knowing from the doctor that her son would attain puberty at his current age however it has not happened yet however one mother in this study is adamantly opposed to seeing her child as a sexual being she felt her child was asexual even though he was entering adolescence as she understood from a sociocultural point of view p10 perceived her son as asexual meaning he has no sexual attraction to people of any gender and no desire for intimacy with another person and is not showing any sexual attitude despite his age of 19 she said so far i do not see any changes in terms of sexuality i dont think so • children with intellectual disabilities carry social emotions while claiming delays in childrens sexual maturity all mothers noticed their children imitate the social emotions related to sexuality much earlier it was observed that the children felt embarrassed if they saw a kissing scene on television ashamed when they came out of the toilet nude and were seen by other siblings and uncomfortable when their mother playfully touched their bodily parts malay children are taught to be appropriately malu which is viewed as highly moral and demonstrating good social emotions according to culture and religion p6 said that her daughter would automatically shut her eyes if she saw an indecent scene on television and she was aware that displaying such sexual actions was not an appropriate thing to watch p2 said that her son would cover his body right after showering to avoid being seen naked by his siblings as it was shameful according to the mother as a muslim awrah must be kept hidden and it has social boundaries that must be respected even within his own family he said that his little brothersister might see his private part so when he wants to take a bath he will make sure that he wears his towel although sometimes i know he does not wear it too when his brothersister is not around p14 claimed that her daughter was apprehensive to physical touch ie tickling when she was 12 years old she believed that it was a good sign that her daughter had an internal sense of shame this realization is crucial to avert the possibility of incest in the future after she reaches puberty we cannot touch any of her body parts she said its a sin if we touch the private part of others its not good for us so she turns out to be angry because she feels unsecured apart from practicing good social emotions all mothers stated that their children do not have any identity crises selfrecognition of gender identity in their children is important to promote and encourage appropriate social development theme 3 cautionhesitance in providing sexual education almost all mothers felt that early sex education is important for children with id and it should be continuously reiterated until adulthood mothers shared three different ways they preferred to deliver sex education and they are as follows it should be appropriate for the childrens age and development the societal and cultural norms and mothers convenience • focus on ageappropriate topics sex education covers a broad range of aspects that are tailored to the childs age and developmental stage all mothers agreed that safe body touch friendship and gender identity and role are a few topics that a preschoolaged child needs to learn about these topics are applicable for older children as well although they are taught at a more advanced level the main lesson they were usually taught at home is safe body touch p8 also taught it herself but chose to wait until her son reached adolescence i told him that if someone tries to do something bad to you touch your butt you cannot befriend that person anymore you must try to avoid them and never stay there with them anymore i also told him to go away if somebody tries to do inappropriate things to him in the toilet please dont get involved with these kinds of people conversely p4 taught her son about appropriate touching from an early age even with their siblings then if you play with your sister you cannot touch her breast or her vagina or her butt you cannot touch her body parts like that care for breasts and pubic hair are topic of concern for female children during the early puberty period and then followed by care during menstruation p15 s daughter started menstruating at 9 years old when she had menarche her mother began to teach her the appropriate way of handling pads and taking care of her private parts and breasts it is not an easy task at first and she just taught her daughter repeatedly until she could perform it independently she did ask me why she had some hair under her private parts it is because she is getting close to puberty she has to shave them at least once a month she cannot just let them be because her body will smell bad if she gets showered she must wipe her body properly i bought her a set of disposable shavers her breast buds are developed too so she has to wear a brassiere when asked about their teaching activities on other reproductive issues such as the sexual relationship between different genders all mothers felt it was inappropriate to teach during adolescence p1 shared her fear that such a conversation might encourage her son to find more information on the issues and dwell in sexual activity she would instead wait for her sons inquiry on that subject it is not his interest he did not ask if we told him about that for example sexual thingy what is sex penetration penis vagina etc i usually avoid telling him about them i try to avoid it because it is not their level yet to learn about it if we go into details he just cant if he gets obsessed with it everything will be finished similarly none of them touched upon the topic of contraception because they felt it was too early to be discussed • prefer figurative replacing taboo words in malay culture words describing sex organs and sex are highly taboo the society often replaces zakar as pelir kote anu awang batang punai burung konek and kotek this could be clearly seen among mothers in this study many mothers used figurative language to refer to the reproductive organs instead of using the scientific words such as a penis or zakar when talking with or educating their children as is customary in malay p4 said when she explained sexual reproductive organs to her children she used symbolic language it was not wrong for her since malay culture stipulates it when he was a nineyearold he asked to be circumcised so when he said that i asked him what he knew about that does he know which part needs to be removed what he should do which foreskin will go under surgical removal he said that hes okay some of his friends told him that they will only remove some foreskin from his burung then his burung will grow larger as he will also grow up to be an adult he told me so similarly p1 described sexual anatomy to her son using figurative terms she has to educate her son using a lot of terms to expand his vocabulary however using correct terms such as zakar is not ideal since it sounds close to a birdcage in malay and may create confusion for the child when i explained about his body parts i called it bird or konek he should know many terms of it i taught him in english and also malay language not just limited to one or two words only he cannot pronounce that word at home we cannot pronounce the word zakar as it sounds like a sangkar he might get confused and it will be difficult for him its too hard to be remembered and instructed in contrast p2 used the correct terminology to define the private parts when talking to her son formerly she used euphemism terms for genitals but after learning about sexuality in children she began to use the correct words she said that the advantage of using proper terminology was that it facilitated communication between parents and children i taught him to use the real words because my son used the standard malay language or english but if there are any of his friends who use different words i will explain further those words themselves • use pertinent opportunity most mothers in this study used reallife experiences to provide sex education informally to their children for them teachable moments are everywhere one mother p2 used her birth experience to teach her older son with id about reproductive health she needed to use a visual medium such as videos to explain how the delivery process works he was 9 when i gave birth to his youngest sister so he just got a baby brother idea back then he also had two elder sisters but he had no idea that i gave birth to his halfsisters for the simple reason he did not realize that babies are born to mothers after seeing me pregnant and giving birth he knew he was now a big brother he inquired about his birth because he was born by caesarean section i played him a video clip then he got it mothers also incorporated religious rules when providing sex education and governing childrens sexual behaviors the words halal and haram are the usual terms used in the quran to designate the categories of lawful or allowed and unlawful or forbidden actions respectively by making those connections to their religion their children will be more submissive and obedient to what is taught p15 said i told her that god does not allow us to show our body parts to others if you go outside and you dont wear a hijab people can see your hair and your breast it is very important information which she must know if we do any good deed allah will reward us with good rewards if we commit sins allah will punish us thereafter thats all ive said moral development is a key aspect of early childhood education as p13 remarked she taught her son about gender identity and physical boundaries while engaging with those of opposite gender which also were bound by islamic social etiquette when he was in standard 5 11 years old i taught him not to play with girls he could not touch any girls because it is prohibited in islam if he contacts the boys then it is okay since we taught him to shake hands with others in the morning we should also remind him not to shake hands with girls i showed him the difference between male dresses and female dresses too most mothers did not really initiate sexual discussion with their children they started talking when their children did anything sexually inappropriate or upon asking about sexual matters p3 utilized her time with her son while driving him to school to talk about the matter especially after she received reports from his teacher with regard to his inappropriate sexual behavior do not try to kiss the girls its not proper to do that their mothers must be mad when they know about it sometimes when i send him to school i keep reminding him to behave well and do not disturb any girl never touch them or do something else it becomes my habit to remind him almost every day so that he will understand another mother p19 noticed that her son saw indecent content while browsing the internet she then used it as a springboard to talk about it spontaneously she believed talking directly while he was still browsing is the most ideal way to advise and approach her son with special needs regarding sexual exploration on the internet and its rules after knowing that he watched some porn indirectly i told him spontaneously because my son has his way to adapt with advice i have to make sure i provide the proper time for him to advise on good characters or attitudes i could not take time and sit together to talk if i see him acting weird i will straight away tell him what he is supposed to do for example if he is watching videos i will remind him that he should not watch weird videos because it is not good for him discussion in this study almost every mother acknowledged their childrens emerging sexuality as they go through adolescence however how they confronted sexuality in their children was different the way mothers perceived sexuality in their children will influence the extent to which se is provided we found that personal understanding sociocultural beliefs sociocultural environmental factors and mothers practices have a significant impact on the views of mothers on sexuality and how they educate children with id social cognitive theory provides a better understanding of this phenomenon by highlighting the effect of personal factors sociocultural norms and behavioral factors on mothers choice to se practices 26 in this study how parents perceive sexuality in their children determined how se is implemented in their daily lives sexuality became understood as a consequence of the interrelation of three reciprocal triad components influence of the environmental factors regardless of their awareness of their social conditioning the mothers in this study were exposed to several environmental factors related to sexuality that promoted the idea of being a competent mother but sexuality not to be stressed during childhood because of its meaning causing providing se at home to their children being quite challenging these factors included islam adat child factors and the socialization that occurs in multicultural societies related to their sexual health either bringing support or providing a barrier for se the impact of the resulting struggle between such factors and their influence on the capability to provide se to their children with id was very clear through examining of these factors without appropriate knowledge and empowerment in formal se adat and islamic knowledge retained a strong influence on these mothers 7 adat perspective on children with id can be observed from mothers views about their childrens development of sexual behavior when it comes to viewing children with disabilities as sexual beings society highlighted children with id as anak syurga children with disabilities are very close to god as many of them innocent and less capable of doing something immoral as compared with ablebodied children and if they did it is not considered sinful this for many mothers may cause them to continue to misjudge children unfavorably and stereotypically as asexual or as perpetually aroused and unable to regulate their sexual desires 31 our findings are congruent with stein et al ie mothers were less likely to believe that their child will have sex during adolescence 17 pownall et al showed that mothers are extra cautious in their attitudes toward sexuality 32 according to pownalls study mothers believed that their children were not prone to be engaged in romantic relationships and had fewer sexual feelings than average adolescents as a result mothers may have thought that providing such information is meaningless and may potentially raise anxiety in their children parents involvement in providing se is also related to environmental factors such as the influence of community advice or information they received in lived experience our study found that institution and healthcare play an important role in parents understandings of sexuality issues in their children the more precise and reliable the information they receive the more they will comprehend the sexuality problem of their children with id this finding is on par with other studies that a lack of knowledge about sexuality is due to a lack of community support which is due to sociocultural beliefs and insufficient material and moral resources offered to them 33 34 35 parents need to be supported and empowered to foster the meaning of sexuality research revealed that parents of adolescents with intellectual disabilities need adequate knowledge attitudes and practices to successfully address sexuality concerns 36 therefore it is vital to increase the visibility of children and adolescents with disabilities in the community including their sexual needs and desires to combat stigma and false beliefs and increase sexuality awareness at the personal level competing cultural norms and knowledge on sexual health this study revealed that mothers had a limited grasp of the meaning of sexuality sexuality as an erotic experience and life reflect mothers personal factors based on their knowledge life experience selfbelief and cognition as their children reached puberty they endured a variety of physical changes including the development of pubic and underarm hair and a rise in body odor for females these changes include the growth of breasts and the onset of menstruation for males the testes develop however their disproportionate cognitive capacity and physical maturity kept their parents in a state of denial previous literature has shown that parents who have children with id had a poor understanding of sexuality when questioned and this will leave parents perplexed as they encounter their childrens developing sexuality 37 38 39 our study also found a common misunderstanding among people that sexuality and sexual intercourse were synonymous and which was influenced mainly by environmental factors 40 this misunderstanding is similar to that found in the study by do et al and studies among malaysian women with female sexual dysfunction where most vietnamese parents and malaysian women were unaware of the true meaning of sexuality 741 in their mind they considered sexuality to be limited to sexual intercourse which creates fear to implement se malaysia like vietnam is an asian nation with strong sociocultural traditions that view sexuality as a sensitive topic to talk about discuss or even learn about despite feeling embarrassed and fearful to discuss se with their children we found mothers who have some knowledge of sexual health realized the need se at home for their children better it is similar to what azira et al discovered ie a statistically significant relationship between parents sexual knowledge and educational background on parents understanding of sex education 25 another research found substantial disparities in knowledge across groups of parents who had completed middle school vocational school or university 42 in our study we found that mothers understandings of sexuality were influenced by their educational backgrounds when we asked about the meaning of sexuality most mothers with a diploma and high educational attainment could respond adequately as compared with those with lower academic status at the behavioral level at this level we realized that the competing influences between environmental factors and personal understanding of mothers and their beliefs toward sexuality and the need for sexual education for their children lead them to the multiple ways of delivering se at home and how deep they will share about it differences can be observed between these two types of mothers in this study namely the educated and the less educated the educated mothers the educated mothers those who predominantly had higher education and better understanding of sexual health were found to have better attitudes toward their childrens journey to adolescence in terms of physical pubescent changes consistent with oneill et al where these mothers embraced and supported their adolescent children with id during their physical pubescent changes 43 this is in contrast to mothers attitudes to changes in adolescent sexual behavior where they expressed a range of views 43 however mothers did not address puberty or sexuality topics beyond menstruation selfcare and the janaba bath which is mainly influenced by islamic teaching menstruation seems to be one element of puberty that mothers felt confident explaining to their daughters since they had learned it formally and informally in islamic education in the mosque or at school 44 on the other hand when there is a hint of nocturnal emission mothers taught their sons in an understandable way about the janaba bath they also stated that se should be ageappropriate and tailored to the individuals mental development and education should be at a level that is understandable by children similar to previous studies 384546 to meet parents perceived requirements and unmet needs of children with id sravanti and jayendra offered a model that described the what why and how of five constructs to ease in providing se understanding human body hygiene and selfcare social skills privacy safety and handling feelings 46 however educating children with disabilities is very challenging almost all educated mothers said that they need to educate children based on mental capabilities and not based on their chronological age that is why these mothers used every opportunity they had to discuss the topic of sexuality indirectly with their children rather than educating them directly previous studies found that parents prefer to wait for their children to initiate the conversation about sex or even until the children already have a particular sexrelated issue due to the difficulties in initiating the topic 4748 some of these mothers in our research also took advantage of every opportunity to give their children ongoing se when a family member was pregnant they discussed how the baby grows and is delivered from a womans body additionally they advised and taught their children indirectly especially when they engaged in improper sexual behaviors the less educated mothers our findings clearly indicated that childrens disability sociocultural norms and other environmental factors have a significant effect on lesseducated mothers decisions to offer se to their children for these mothers the thought of discussing sexuality generates trepidation and depending on the childrens level of comprehension this may lead to the selection of a specific topic for discussion our findings are consistent with prior works of literature which indicated that parents are concerned that se may exacerbate their childrens sexual desires and result in improper sexual behavior 3739 despite the debate surrounding se research indicates that it does not promote sexual activity but rather promotes abstinence and equips adolescents with the information and skills essential for appropriate sexual behavior 49 children with id may have cognitive and behavioral capacities that are substantially delayed in terms of their physical development and sexual desires this discordance may result in improper sexual practices and societal distress se should be comprehensive and incorporate all aspects of sexuality it includes providing knowledge on human sexual anatomy and reproduction sexual intimacy sexual pleasure sexual orientation gender identity sexual restraint contraceptive methods sexually transmitted diseases and reproductive rights and responsibilities 5 we also found that the lesseducated mothers in our study used more figurative language as compared with educated mothers to refer to reproductive organs instead of using the appropriate terminology as is customary in malay our findings contrast with previous research conducted among malaysian parents in which the vast majority of parents reported educating their children on the correct names for their genital organs 25 at a young age parents should begin teaching their children ageappropriate terminology for body parts and their functions as early as 4 years old 25 there is mounting evidence that using anatomically precise terms such as penis scrotum vagina and vulva benefits childrens early development of body confidence selfesteem and safety 5051 many parents are better at teaching their children to recognize their anatomy with general amusing or diverting terms there is a considerable worry that euphemism conveys the notion that these parts are shameful humiliating or secretive nature by referring to these parts by their accurate terminology discussions on maintaining them in healthy clean and safe ways can be facilitated parents should speak clearly and without fear of stigma or embarrassment using the right terminology and speaking freely about these subjects may prepare the children to voice future worries about sexual health exploitation or abuse and most crucially it may ensure childrens safety 51 all mothers in our study were malay muslims thus when they taught their children they incorporated religious beliefs as a component of se they taught their children the concept of halal and haram in islam and the concept of shyness shyness serves as an inner constraint allowing muslims to sustain proper behavior and morals 47 one study conducted among indonesian parents to explore their perceptions on providing se to children with id found that incorporating religious rules in sexual education made them feel better and made it easier to communicate 39 this research is also consistent with the study by elias et al in which they conducted their qualitative study among muslim mothers in pasir puteh kelantan according to mothers se is already ingrained in their everyday lives as muslims and from an islamic perspective teaching se must begin with shyness 52 we acknowledge the studys shortcomings despite attempts to engage mothers and fathers from many ethnic backgrounds the endeavor was in vain it represented however the actual ethnic composition of kelantan where 94 of the population is malay and the majority of childrens primary caregivers are women future research should involve parents from various sociodemographic backgrounds or geographical regions furthermore a mixedmethod approach may be used to obtain comprehensive results on parents knowledge attitudes and practices about se of their children with disabilities conclusions some mothers of children with id had poor understandings regarding sexuality and they viewed sexuality primarily through the lens of sexual encounters and intimate relationships mothers views on sexual behavior varied as the majority of mothers did not foresee their offspring engaging in sexual behaviors sexually explicit events were often considered inappropriate or disagreeable for children with id sexuality and se can be an extremely challenging topic of the discussion between mothers and their children with id therefore mothers practice different approaches when providing se to their children either following physicality or sociocultural methods this study emphasizes the need for strategies to increase parents understanding and awareness regarding sexuality and appropriate delivery of se to their children with id and that it should be a shared responsibility between healthcare providers teachers and social workers to help manage their childrens emerging sexuality effectively data availability statement not applicable author contributions conceptualization rm and nnk methodology rm nnk software rm and nnk validation rm zmy and rz formal analysis nnk investigation nnk resources nnk data curation nnk writingoriginal draft preparation nnk writingreview and editing rm zmy and rz supervision rm zmy and rz project administration rm funding acquisition rm all authors have read and agreed to the published version of the manuscript funding this research received seed money from universiti sains malaysia medical school institutional review board statement the study was conducted in accordance with the declaration of helsinki and approved by the ethics committee of universiti sains malaysia informed consent statement informed consent was obtained from all subjects involved in the study including for publication purposes

sex education se is still a controversial and sensitive topic in malaysia thus individuals with intellectual disability receive less information about se formally as malaysian culture believes that students with disabilities should be shielded from everything connected to sexuality owing to their paucity of maturity and intellectual comprehension of the topic due to that reason nonformal education by the parent is very important to fill that needful gap this study aimed to explore the experience of mothers on the meanings of sexuality and implementing sex education for their children with id we adopted a phenomenological framework and social cognitive theory to increase understanding of the phenomenon and conducted it using indepth interviews twenty mothers with children aged 1019 who were diagnosed with mild to moderate id andor other cognitive disabilities were involved almost all mothers acknowledged the influence of sociocultural factors and religion on meanings of sexuality and practicing se they realized their childrens emerging sexual behavior as they go through the adolescence period however how they confronted sexuality and sex education with their vulnerable children was different three themes emerged 1 sexuality as an erotic experience in life which enlightens mothers views on sexuality relying mainly on sexual intimacy and sexual being 2 perceived their childrens sexual maturity is different which reflects the mothers attitude toward their childrens sexual development 3 cautionhesitance in providing sexuality education which summarizes mothers ways of delivering se either following physicality or through sociocultural ways our findings exemplify the need for strategies to increase parents understanding and awareness regarding sexuality and appropriate delivery of se to ensure its success it should be a shared responsibility among all relevant stakeholders

introduction one of the primary and basic human needs for a good life and to achieve perfection and happiness is to have security in its various dimensions and types so that in its light he can find peace and walk on the path of happiness and development security has different definitions in this way according to some it is defined as a space without any danger and harm it also considers security to mean being loved accepted and friendly according to the definition in the cambridge dictionary security is the protection of a person building organization or country against threats such as crime or attacks from foreign countries security practically covers all aspects of human life talking about personal national social air road food security etc shows the pervasiveness of security in all aspects of individual life security is one of the basic human needs and motivations so that with its deterioration the peace of mind of a person is lost and anxiety and restlessness take its place and the fulfillment of many human needs depends on providing security so that abraham maslow also places the feeling of security in the hierarchy of needs immediately after satisfying the basic needs therefore guaranteeing security is necessary and necessary because human life depends on it and disruption of its mechanism will cause insecurity and distress in human condition and endanger his mental health bozan believes that security can be approached both objectively and subjectively and nothing guarantees that the two are in the same line although security is an important issue many sociologists describe the feeling of security as more important and necessary than the existence of security the subjective dimension of security or the feeling of security has gained undeniable importance and from the point of view of many experts the feeling of security is more important than the existence of security the use of information and communication technology solutions is necessary for the successful implementation of social policies including the reform of social security and the strategic design and management of social security programs the key to sustainable economic development lies in increasing the input of production factors and increasing production efficiency neoclassical and new economic growth theories believe that scientific and technological innovation and revolution can improve production efficiency and promote social progress and economic development in conditions where there are limited production factors various areas of social policies such as health education social care social security etc have been affected by technological innovations which will be increasingly affected by its further developments in the future several studies have been conducted on the impact of technological innovations on society and the economy they show the tremendous impact of technology in these fields the most clearly and visibly impactful technological advances seem to be those that directly affect the ways in which humans communicate in fact information and communication technology plays a very important role in all aspects of national life of todays societies information and communication technology the speed of life even the ways we do business because of it it changes the way we access information and services communicate with each other and entertain ourselves information and communication technology strengthens and supports the global economy also it is related to human rights and in the best case it supports freedom of expression and the right to use information based on article 19 of the universal declaration of human rights therefore today modern information technologies have had significant effects on the position and performance of many societies organizations and individuals which in parallel with the tremendous progress that has been made in this field tie the fate of societies organizations and individuals to these modern technologies every day more than in the past from an organizational point of view regardless of the philosophy of the existence of technology in any organization due to the high importance of tasks it is necessary to pay attention to the knowledge of dor 201001 dor 20 12821252514024724 4724 downloaded from jaypsiranmehracir on 20231221 people and what is considered is the use of uptodate and new technologies with the aim of increasing the capabilities of human resources despite all the positive points of technological progress this technology is also associated with negative social consequences such as the exclusion of a large part of the worlds population from the benefits of digitalization which is basically due to their low income which cannot afford highquality access therefore a large demand gap has been created it causes other problems such as the spread of fake news and cyber attacks the increasing risk to privacy and security of personal data and thus endangering public and social security the widespread production of electronic waste etc has also worsened therefore the increase in inequality in many countries and the deprivation of vulnerable population groups sometimes makes it more difficult to build social and political systems that are able to properly guide the development of new technologies also in this research where the sense of social security has been investigated according to the amount of information technology use of people this issue has been referred to from different angles throughout human life security has been considered one of the main human needs and its importance has increased in the modern era to such an extent that according to some experts the establishment of security is the special and irreplaceable task of governments in todays modern world having no fear in life and the existence of life and financial security honor and social dignity protection of freedom and legitimate individual and social rights creating general satisfaction and in a word the absence of threats in discussing the development process security is one of the basic indicators especially in future cities where the structure work and social activities are transformed today the term security covers a wide range of concepts from physical and financial security to mental and psychological security and feeling secure about the future concepts that gradually gain significant importance in peoples lives and develop with the progress of societies and have double importance in interaction with other aspects of social development the adoption and integration of digital and advanced technologies cloud computing artificial intelligence big data analysis and robotics means that we are moving towards a digitalized economy and society a world where traditional economies with their organizational production and governance systems are produced overlapped or merged with the digital economy and with their innovative features in terms of business models creating more complex ecosystems therefore although technological innovations have been solutions to human needs they may have the transformative power to become new engines to advance economic growth and social improvement however the impact of technological change on society is not always beneficial there is an increasing concern that technological innovations may create problems as much as solve them the findings of maubai et als research on the sense of security of citizens and tourists in seven european countries indicated that theft is one of the most important factors in reducing the sense of security also the results indicated that access to appropriate health services money exchange facilities and other information centers are among the most important factors that strengthen the sense of security the results of mustafa et als research on the safety and security of cities and their impact on life in egypt indicated that insecurity directly and indirectly affects the shape of cities the results of the research of spadaro et al regarding the effects of trust on increasing the feeling of social security indicated that increasing the level of trust is effective in increasing the level of feeling of security the basic questions that the current research seeks to answer are whether the use of information technology affects peoples sense of security is the feeling of social security the same among the users of information technology and how can the feeling of security be increased method the current research is practical from the point of view of the goal because the results of its findings can be used to solve the identified problems and from the point of view of nature and method it is a descriptivesurvey of the correlation type because it tries to obtain the required information from the current state of the statistical sample by using the questionnaire one of its most important advantages is the ability to generalize the results the required data were collected from the youth of tabriz by directly referring to selected samples of people and using two separate standard questionnaires by gennaro et al and researchermade in the construction and setting of the researchermade questionnaire in addition to the proposed theories directed interviews with the target population were also used and the questionnaire was prepared the statistical population of the current research consists of all young people of tabriz city in this research cochrans formula was used to estimate the sample size and 400 people were selected by stratified random sampling method according to the sample size at the end after collecting the data and calculating the descriptive statistics of the collected information the data has been analyzed by calculating the correlation coefficient materials 1 social security questionnaire in this study in order to collect part of the data required for the research a survey was conducted using a researchermade questionnaire to explain the social security of the youth of tabriz therefore the dependent variable considered in this research has been measured with the nine dimensions of life security financial security intellectual security collective security law enforcement security cyber security moral security cultural security and legal security these dimensions were formulated according to previous studies existing theories and also the new considerations of the researcher which were designed in the form of closedended questions a 5level likert scale was used in formulating the questions of the questionnaire and collecting the relevant answers at first face validity was used to secure the validity of the research tool and determine its validity therefore for this purpose by presenting the questions to 4 experts the validity of the prepared questionnaire was confirmed by the experts further in order to determine the reliability of the questionnaire questions cronbachs alpha test was carried out to determine the internal consistency of the items from a statistical point of view for this purpose in the first step after the experimental distribution of the questionnaire among 35 people it was observed that the coefficients of total alpha and cronbachs alpha of some items were weak therefore in order not to damage the content validity of the scale after modifying the text of the mentioned items and even removing some items the modified questionnaires were distributed again and after collecting them while observing the improvement of the individual alpha coefficients of each item as well as the cronbachs alpha of the entire questionnaire in the last step the final questionnaire was distributed among all members of the sample after completing the questionnaires the calculated total cronbachs alpha was 0794 which was significant at the 0001 level which showed the appropriateness of the designed questions at this stage confirmatory factor analysis and factor loading values of each construct were used to measure construct validity its results are considered for each of the nine dimensions and calculated for social security along with cronbachs alpha values all of which are significant at the one and five percent level factor loadings of all items are higher than 04 therefore in general we will not need to delete or modify any of the questions considering that the cronbachs alpha coefficient of the measured items in each of the investigated dimensions is higher than 07 it can be concluded that the reliability of the questionnaire is also at a good level and is approved for all the nine dimensions considered for social security options with a 5point likert scale and a rank level have been considered and finally by converting to a distance level they have been examined in the final analysis information technology usage technology in this study the use of information technology was measured by measuring the use of short messages multimedia messages the internet and social networks for this purpose the scale designed by genaro et al based on ten psychological indicators from the manual for diagnosis and classification of mental disorders was used this questionnaire has 23 items based on a sixpoint likert response format this scale does not have subscales and subfactors they reported the reliability of this scale using the internal consistency method on male and female spanish students α 087 subjects with scores above 75 are identified as excessive users and those below 25 as low users however in this study two new items related to new virtual space platforms were added to the items of the english version as well as changing the options from a sixpoint likert scale to a fivepoint scale then according to the answers provided this variable has been converted into an interval level and used in the final analysis the results of the structural validity test using confirmatory factor analysis showed that the factor loading of all items is greater than 04 and the alpha coefficient for the entire questionnaire is 0818 which is satisfactory and significant at the 0001 level implementation according to the explanations given in the research tool after collecting the data using spss software the required information was extracted and after categorizing the information the hypotheses were tested by calculating the pearson correlation coefficient results in this study among the dimensions of feeling of social security the lowest feeling of security is related to the dimension of moral security and the highest feeling of security is related to the dimension of personal security the mean feeling of social security of women is equal to and the mean feeling of social security of men is equal to table 1 shows the descriptive statistics related to the social security feeling variable and its dimensions as seen in table 2 the lowest rate of using information technology was 39 and the highest rate was 121 the variable mean of the use of information technology is equal to 6287 which indicates the high use of information technology by the respondents the standard deviation and variance were and respectively the amount of skewness was 0552 which is a negative skewness which means that the curve went to the left and most of the data was on the right side and the peak of the data was on the right side this means that the use of information technology is higher than the mean the results of pearsons correlation coefficient test between the variable of information technology use and the feeling of social security and its dimensions are shown in table 3 the results show that the intensity of correlation between the amount of information technology use with the dimensions of financial security and collective security is very weak and direct the intensity of correlation between the amount of information technology use with the dimensions of intellectual security and police security and legal security is very weak and inverse however none of the relationships were significant the intensity of the correlation between the use of information technology with the dimensions of life safety moral safety and cultural safety is very weak very weak the type of relationship between the use of information technology and life safety moral safety and cultural safety has been direct and significant this means that with the increase in the use of information technology the amount of life security and the amount of cultural security also increases and vice versa finally the correlation coefficient between the amount of information technology use with the social security feeling variable is equal to and its significance level is it means that there is a significant and direct relationship between two variables this means that with the increase in the use of information technology the feeling of social security also increases and vice versa conclusion this research was conducted in order to investigate the effect of the use of information technology on the sense of social security of young people in tabriz 400 people were selected as a sample from the statistical population in the theoretical part we used the ideas of thinkers of different schools in the field of social security and expressed our meaning from the concepts presented in the most key definition the feeling of security was defined as the lack of fear of human values being attacked and the absence of fear and fear regarding legitimate rights and freedoms according to the results there is a degree of use of information technology with a sense of social security the pearson correlation coefficient between the amount of information technology use and the social security feeling variable indicates that there is a significant and direct relationship between the two variables this means that with the increase in the use of information technology the feeling of social security also increases and vice versa the intensity of the correlation between the use of information technology and the dimension of life security is very strong the intensity of the correlation between the amount of information technology use and the dimension of moral security is very strong the intensity of the correlation between the amount of information technology use and the dimension of cultural security is very strong the type of relationship between the use of information technology and life safety moral safety and cultural safety has been direct and significant this means that with the increase in the use of information technology the amount of life security and the amount of cultural security also increases and vice versa this means that the correct use of information process has intensified that is crossborder actors have fueled these ethnic religious and cultural differences and differences through modern means of communication and since in addition to the traditional threat that was mainly of a military nature economic environmental and political social and cultural threats have expanded we are witnessing internal disintegration extreme tendency towards other than self and selfview in people which has spread as a result of cultural globalization and causes loss of trust and security therefore as a result of the development of modern information technology such as mobile phones with the ability to send sms multimedia messages and connect to the internet and virtual spaces such as viber instagram line tango and wechat diverse and numerous sources of information have been independently and freely available to people this causes people to communicate across borders and after that we have seen the formation of a new basis of identity which may have weakened the religious national and indigenous identity and culture and caused the spread of western culture and irreligiousness therefore it weakens social security especially cultural and identity security in the end according to the obtained information some suggestions can be made • the use of information technology is effective in increasing peoples sense of security therefore the responsible institutions should try to improve the quality and speed of the internet • media literacy should be taught to people so that people with good thinking and media literacy can distinguish between good and bad media literacy • in this research it was found that the young men of tabriz had a high sense of social security compared to the young women of tabriz so the relevant institutions such as the police the social deputy of naja should improve the sense of social security of young people and especially women of tabriz city with their actions conflict of interest according to the authors this article has no financial sponsor or conflict of interest

background and aim throughout human life security is considered one of the main human needs and its importance has increased in the modern era to such an extent that according to some experts the special and unique work of governments in todays modern world is to establish security is due to the importance of security and the feeling of security the present research has investigated the level of feeling of social security and the recognition of the most important factors related to it methods this research was conducted by survey method and using questionnaire technique the statistical population of the research is all young people aged 2035 living in tabriz city and the sample size was calculated using cochrans formula of 400 people they were selected by multistage cluster sampling method results the data analysis indicated that if communication and information technology is used correctly it can be used as an empowerment tool for the development of more comprehensive social security the correlation coefficient between the amount of use of information technology with the social security feeling variable is equal to 0115 and its significance level is 0021 which indicates that there is a significant and direct relationship between the two variables among the dimensions of feeling of social security the lowest feeling of security is related to the dimension of moral security and the highest feeling of security is related to the dimension of personal security conclusion the findings indicated that there was a significant and direct relationship between the amount of information technology use and the feeling of social security

introduction party attachments are not formed in isolation friends colleagues and most importantly family members have been found to influence preferences for political parties the influence of family members was the subject of numerous studies in the 1960s and 1970s with the focus in electoral research later shifting to shortterm voting motives such as campaigns personalities and economics in recent times the debate around the social logic behind party attachments has received renewed attention with new empirical work focusing on the applicability of the traditional social learning mechanisms to the current political culture it is important to understand how these social learning mechanisms rooted in a historical context of strong embeddedness in one single political environment apply to the current individualized political landscape earlier findings have been revised while important advances have also been made in the study of genetic political parentchild inheritance thanks to the availability of largescale panel datasets and more advanced analytical models many empirical advances have also been made these advances have allowed researchers to move beyond generalities and to dig deeper into the particular mechanisms behind the social network influence of political behaviours and attitudes this study aims to contribute to this debate by examining whether classical social learning mechanisms at the level of party preferences in families can still be applied in a dealigned political context i make grateful use of new empirical panel data gathered in a fragmented multiparty setting that allows us to understand the different ways in which different family members influence each others party preferences over time my stated goal is to further disentangle the differences between mothers and fathers in this political socialization process a topic that is often disregarded due to data restrictions not only party alignments but also household patterns have changed dramatically since the first empirical studies on political socialization were published in the 1960s and 1970s and i therefore aim to update the classical social learning mechanisms within this new societal and political context i particularly focus on the differences between fathers and mothers in this socialization process most recent studies have paid little attention to the different roles fathers and mothers can play in the development of party preferences this is remarkable as developmental studies indicate that mothers and fathers play different parenting roles and that they emphasize different political issues i aim to clearly disentangle the different political roles that mothers and fathers take on in the household and analyse the way in which they influence their childrens party preferences empirically i aim to further build on recent developments among others by taking into account the fact that children in spite of their age and limited experience should not be treated merely as passive receivers of political stimuli in the new approach to family influences family communication and socialization are seen as reciprocal processes in which adolescents can initiate political discussions and incite parents to increase their civic competencies and no longer as topdown processes of inheritance imprinting or even family indoctrination i will take this reciprocal influence into account by applying structural equation modelling to a recently gathered largescale panel dataset on parentchild interaction in belgium the parentchild socialization study 20122013 studying social learning in a new political context theoretically studies on parentchild transmission depart from a social learning perspective this social logic of politics strand of research was crucial to early partisanship studies subsequent empirical studies have indeed confirmed that party attachments generally develop early in life within ones immediate social network although this social learning model was very influential for the first generation of electoral studies subsequent researchers substantially shifted away from this approach the focus on socially embedded partisanship to explain voting behaviour moved to more individualized explanations such as candidate evaluations retrospective evaluations and policy preferences a logical development against the background of partisan dealignment modes of participation have altered as well with a stronger focus on noninstitutionalized forms of political participation that particularly appeal to younger citizens such as protesting online activism lifestyle politics and consumer activism all these evolutions have changed citizens formal and psychological attachments to political parties one of the clearest consequences of these processes is the rise in electoral volatility this is important since clearly observable cues are essential in social learning theory for social learning to take place those cues need to be regularly communicated to be retained internalized and reproduced but as party attachments have significantly changed over the past four decades it is likely that these socializing cues and therefore the complete process of social learning have been affected as well the question then becomes to what extent are the social learning mechanisms that were applied to explain the early development of party attachments in a society with high partisanship levels still applicable in a context where this selfperceived group membership has increasingly been losing appeal evolution in the political roles of mothers and fathers studies published in the heyday of political socialization research in the 1960s and 1970s still guide our current expectations around the influence of household interaction on politics however subsequent decades were marked by major developments for instance at the level of the composition of household patterns therefore the first central empirical goal of this paper is to update these previous findings to the current timeframe in 1971 jennings and niemi had already analysed the differences in the political roles that mothers and fathers take on and tested the supposed notion that fathers are the representatives of the political community and act as a bridge between the family and broader society the results did not fully confirm their expectations although fathers have a persistent advantage when it comes to indicators of politicization the researchers also observed an evolution towards a rolesharing division of political labour in the family jennings later confirmed that fathers have a stronger role as a source of political information and tend to act more as a referent particularly for their sons in light of the recent research around participation this gender gap within the family is not that surprising at the level of conventional political participation gender is still one of the main sources of inequality although studies have suggested that this gender gap has been reversed for voter turnout and other less institutionalized forms of participation for the other variables in jennings and niemis approach to political labour empirical studies also point in the direction of a persistent gender gap in a first exploratory phase i aim to develop an uptodate picture of this division of political labour within the household the political influence of mothers and fathers although gender might be a determinant of political engagement within the family this does not imply that this has immediate consequences for the political influence that parents exert on their children this has been confirmed by largescale studies conducted in the past decades jennings and langton argued that a child is more likely to agree with the parent with whom heshe has a more intense relationship regardless of whether that parent is the mother or the father a tendency in recent literature is to focus on a genderspecific instead of a genderdominant transmission process in which sons are more heavily influenced by their father and daughters by their mother the idea is that children more strongly identify with a parent of the same gender so that fatherson and motherdaughter transmission patterns are likely to be more clearly observable empirical evidence for this genderspecific hypothesis is of a mixed nature and strongly dependent on the political attitude being studied a recent study by filler and jennings for instance showed that this genderspecific socialization pattern was the most dominant one for the transmission of gender role attitudes and found an explanation for this in the fact that the attitudes studied in their work were explicitly genderrelated although i focus on less genderdependent variables in this paper it is still useful to acknowledge this possibility and to take it into account in terms of party preferences zuckerman et al made one of the most comprehensive recent studies to tackle the question of paternal versus maternal influence they confirm the earlier findings of jennings and niemi and find mothers to be more at the centre of family politics with the father occupying a more complex position they explain the stronger influence of mothers by pointing out that children spend more time with their mothers feel closer to them and therefore tend to be more influenced by them i formulate my expectations visàvis topdown parental influence based on these findings in hypotheses 1 and 2 below when studying the influence between family members one needs to take into account more than just the topdown processes it also essential to look into the mutual influence between adult partners and the trickleup relation between adolescents and their parents mutual partner influence in particular has received more scholarly attention in recent times on the one hand i expected a strong correlation between the political preferences of partners to be the result of a mutual selection process individuals do not select a partner based on political party preferences but the similarity is often a byproduct of the similarity between partners in other respects klofstad et al have shown that spouses tend to share political predispositions but that the latter do not play a role in the selection of potential dates in the politics of mate choice alford et al also underscore the tendency of individuals to initially select likeminded mates rather than assimilating their views to one another in the course of the marriage on the other hand empirical studies have shown that partners exert a strong mutual influence on each other because they live together and change opinions together husbands and wives tend to have similar preferences prior to marrying but this similarity grows stronger as time passes coffé and need indeed confirm that mutual influence is an important explanation for partner similarity following these empirical findings the political similarity between partners can be expected to be both the result of general shared predispositions and a process of mutual socialization because of these two conflicting mechanisms i will leave the process of mutual influence between marital partners open as an empirical research question since no single hypothesis can be drawn from these inconsistent empirical findings finally political socialization scholars have underlined that the traditional topdown parentchild socialization approach needs to be revised and have instead proposed a more interactive family learning model in which children are not mere receivers of political stimuli mcdevitt and chaffee here made a major contribution by showing that children can play a role in parental growth not so much by causing actual changes in their parents preferences but rather through behaviour that increases their political engagement they do not argue that children directly influence the political opinions of their parents and thus simply reverse the causality but claim instead that they can initiate discussions and act as a catalyst that shakes up the family system zuckerman et al also stated that it is useful to take into account the reciprocal relationship between children and parents since we cannot simply assume that socialization is a topdown process in a more contemporary approach to political socialization as is evidenced by hypothesis 3 i do not expect adolescent children to directly influence their parents but i do take the possibility and the reciprocity of the relationship into account in light of these studies h1 both mothers and fathers have a significant positive influence on the development of their childrens party preferences h2 mothers have a stronger positive influence on the development of their childrens party preferences than fathers h3 adolescent children do not directly influence their parents party preferences data pcss 20122013 one of the common limitations of earlier studies was that the analyses were based on static data in order to make reliable statements on the direction of influence between family members however we need a longitudinal approach the panel data from the belgian pcss 20122013 were very useful in addressing the shortcomings of these earlier studies this survey was administered among respondents in the flemish part of the country one of the most fragmented multiparty systems in western europe and one in which a large number of new and smaller parties have risen over the past decades considering the high level of volatility in this party system i expect this twowave survey to allow mapping of the changes between the two waves the survey was conducted in 2012 and 2013 among 15and 16yearold adolescents and their parents in belgium in the first wave a representative sample of 3426 adolescents was interviewed during school hours via a written questionnaire they simultaneously received a questionnaire for both their parents to complete at home the pupils were selected using a stratified random sample of 61 dutchlanguage schools in belgium based both on province and school stream both parents submitted completed questionnaires for 608 of all adolescents at least one of the two parents completed the survey for 727 of the adolescents both at the level of gender and school stream the sample closely resembles the normal population distribution and can be considered representative for this age group in flanders one year later the researchers again visited the same schools they were able to poll most of the adolescents who also participated in the initial survey of the original triads 687 are also available in the second wave from the original 3426 adolescents i have full information on 2085 fathermotherchild triads from these 2085 cases i have full panel information on 1430 triads in the first descriptive analysis results are shown for wave 2 variables for these 1430 triads i did not use listwise deletion in the full structural equation model because i wanted to make optimal use of all the available information including that for the incomplete panel triads as my focus is on the influence between mothers fathers and children within the household i only selected those adolescent cases where all family members lived in the same household this sample was used for all the descriptive analyses and for the structural equation model 1 in terms of the representativeness of the sample i compared the sample of adolescents with married parents in this study to the population and the full dataset the slight underrepresentation of pupils with a lower socioeconomic status enrolled in vocational education becomes somewhat bigger when i select only those where both parents live in the same household analyses first i aim to form a clearer view of the general political dynamics in contemporary households with a few basic indicators 2 the first one is political interest which was measured using a single indicator to what extent are you interested in politics and social issues ranging from not interested to very interested following the news was measured through the question how often do you read watch or listen to the news ranging from never to daily the index participatory activities is a sum of three political activities on a scale ranging from never and from time to time to often the adult respondents indicated how often they had looked up information on a party before going to the polling station helped a candidate during the election campaign and ran as a candidate for the elections during the previous electoral campaign as mentioned above these are three participatory activities that might be labelled conventional political participation i selected these three to stay as close as possible to the original jennings and niemi index on conventional political participation in the pcss data there was no question on voting itself since belgium has a compulsory voting system and an average turnout of around 90 political efficacy was measured using a single indicator for internal efficacy how often do you think politics is so complicated that you do not understand what is going on ranging from 1 most of the time to 5 never the adolescent respondents were asked the same questions but with respect to their intended behaviour as adults i compared the scores for these variables with a number of rudimentary calculations jennings and niemi made based on the 1965 university of michigan data these data are known as the youthparent socialization panel study of which the first wave was conducted among a national sample of parents and children in the united states in 1965 the authors proposed a measure for the fathers net advantage over the mother for politicization indicators and subsequently calculated the cases in which fathers scored higher on an indicator than mothers and vice versa the cases in which mothers scored higher than fathers on a variable were then subtracted from the cases in which the fathers scored higher than the mothers to reach a net advantage score a procedure that i replicated with the pcss data some indicators were measured in different ways in the two surveys and the results should consequently be interpreted with caution but as i am analysing the differences between partners within one sample and not comparing scores between the two samples this should not result in major biases in the actual results surprisingly the results are comparable to those 1960 situation fathers are still more efficacious and interested and they follow the news more often than their partners do we do not see a clear difference for the participatory activities while jennings and niemi found that fathers were 18 more likely to participate in electoral activities than mothers we do not see a difference in the 2013 pcss study an observation in line with recent studies on turnout reciprocal influence on voting intentions next i examined the difference in political influence between fathers and mothers by mapping changes over time i expected these shortterm changes to be observable in this competitive multiparty setting but to make sure these switches actually occurred i mapped all movements between the two waves of the adolescents in the pcss sample 432 did not have a stable preference between the two waves 256 of the fathers changed parties while for the mothers this figure was 287 in terms of switches in the direction of other family members 203 of the mothers with a different party preference to their partners in wave 1 changed their voting intention to that of the fathers in wave 2 while 198 of the fathers in this situation changed their voting intention to that of the mothers in wave 2 of the adolescents whose voting intentions differed from those of both their parents in wave 1 104 switched to the party of their father while 167 switched to the party of their mother it is clear that movements do indeed take place as family members adapt their voting intentions to those of other members of the family but to fully grasp family members influence on each other it is more useful to analyse an earlier step in the voting decisionmaking process the consideration stage in the descriptive statistics i only took into account actual changes in voting intention but as the second wave was conducted only a year later it is important to analyse subtler changes i therefore do not analyse the actual changes in voting choice but the subtler changes in the propensity to vote i estimate a structural equation model to analyse the reciprocal influence of adolescents mothers and fathers on each other this is a change model in which i include both crosslagged effects and lagged dependent variables i recognize that including autoregressive terms can cause incorrect interpretation of other independent variables particularly in mixed models the general idea behind the lagged dependent variable model is that the lagged value of y serves as a proxy for any unobserved betweenperson variance an undesirable side effect of this procedure is that the autoregressive term can become very dominant in the model and decrease the effect sizes of other independent variables to such an extent that it can lead to an underestimation of the importance of these variables however the question of whether or not to include the lagged dependent variable in the model is not one of model fit but rather a theoretical one for this study including the lagged dependent variable was theoretically important since i also aimed to compare the stability of the coefficients for mothers fathers and adolescents in the sample comparison of these stability coefficients provides useful information on the likelihood of family influence if the lagged ycoefficients are for instance stronger among adults than among adolescents we can expect there to be less room for external influence from other family members in the analyses i focused on the four largest parties in the adolescent sample the christian democrats the flemish nationalist party the green party and the radical right party vlaams belang i also applied these analyses to the other smaller parties and the results went in the same direction but to guarantee the reliability of the presented results i limited my selection to the four largest parties to test the genderspecific socialization mechanisms i described in the introduction i ran additional multigroup models comparing male and female adolescents dependent variable propensity to vote although the bulk of electoral studies use voting intention or partisanship as a dependent variable this methodological approach shows some important disadvantages particularly in the case of multiparty systems by forcing respondents to choose one party at a time it becomes impossible to take into account the possibility of multiple party identifications by focusing only on actual voting intentions it also becomes impossible to take into account possible changes to the actual decision due to strategic motives in general a large part of the decisionmaking process remains underexposed we do for instance not know which other parties are under consideration it is exactly this process that we can analyse with a measure for the propensity to vote for each of the different parties all respondents were asked to indicate the likelihood they would ever vote for the stated parties in the future on a 0 to 10 scale 3 in this way it became possible to analyse how voters rated all parties and not just the party they said they would vote for this measure has been used in recent electoral research and has produced qualified results by splitting the party choice process into a consideration stage and the ultimate vote choice it is precisely in this consideration stage rather than in the actual voting decision that i expect the first influence of family members to manifest itself an additional empirical advantage is that this approach maximizes response rates for all analysed parties which redresses the potential incomparability of results independent variables as this analysis mainly aims to examine how mothers fathers and their adolescent children influence each others propensities to vote for a particular party the main explanatory variables are the propensities to vote in wave 1 i moreover controlled for three basic variables that have been found to influence voting behaviour gender ses and basic ideological predispositions these are principally stable attributes but they can be related to changes in voting propensities i mainly included these basic attributes because of the specific and dynamic political party landscape in belgium many substantial movements have taken place over the past years with the successful emergence of many new parties for some of these new parties structural characteristics such as gender and educational status have proved to be important to explain structural changes in electoral support these stable attributes can play a role in explaining party preferences at one point in time but also in explaining changes in party preferences over time gender was only controlled for in the adolescent group as the parent samples were subdivided into mothers and fathers for parental ses i used educational level ranging from elementary school to university education and employment which indicated whether the parent was professionally employed or not for the adolescents i used educational goal an expression of the educational level they expect to reach in the future ranging from i will probably not finish high school to university education this variable was only measured in the second wave to include a basic variable for ideology i used a variable that tapped basic leftright identification ranging from 0 to 10 additionally i included a variable that indicated change in leftright orientation over time the thinking behind this change in ideological predisposition might affect voting propensities as well i calculated this by subtracting the leftright position of the respondents in wave 2 from their leftright position in wave 1 as such a positive score indicates a move to the left a negative score a move to the right and a nullscore indicates no change between both time points a descriptive analysis shows that 563 of the adolescents 522 of the mothers and 529 of the fathers somewhat changed their leftright position between waves 1 and 2 a full description is included in the variable overview in online appendix 1 in the structural equation model i regress the voting propensities of the mothers fathers and adolescent children on their own voting intentions in wave 2 and on the voting intentions of each of the other family members 4 the full results are presented in table 2 and summarized schematically in figure 2 first these results indicate that there is indeed a significant positive influence from both parents on their adolescent children but we do not observe differences between mothers and fathers when it comes to the topdown influence of their adolescent children on party preferences the crosslagged effects of both mothers and fathers who influence their child clearly go in the same direction for the four analysed parties in an additional test i estimated a multigroup model to control for possible genderspecific effects i did observe a genderspecific pattern of influence for the christian democrats where mothers influenced their daughters more strongly and fathers their sons but this was not true for the other parties so this relation should not be generalized second looking at the horizontal influence that both adult partners have on one another i observed a significant mutual influence but i could not observe any patterns where one partner was more influential than the other only for the radical right vlaams belang did there seem to be a discrepancy with mothers having a stronger influence on fathers than vice versa combining these first two findings the results of this structural equation model indicate that there is no reason to assume that fathers or mothers structurally differ in their party political influence within the household either when it comes to horizontal influence or topdown influence third as hypothesized the adolescent children in the survey do not exert a clear or equally strong trickleup influence on the voting intentions of their parents i do however find a crosslagged effect of adolescents influencing their parents propensity to vote for the christian democrats note reported measures were obtained through a structural equation model analysis in mplus7 statistical software package with maximum likelihood estimation i did not use listwise deletion for the models in order to make use of all the available information this resulted in a higher n as i was also able to use data from incomplete fathermotherchild panel triads the results were unstandardized coefficients standard errors and pvalues table 2 and the green party these effects are small and less stable however and should not be generalized finally i did find differences between parties with the radical right party the clearest exception for this party family members influence on each other was limited when compared to other parties which could possibly be explained by a social desirability bias that also exists within family discussions looking at the other variables in the model another clear trend is that the stability of voting propensities is strong for all family members but it is clearly stronger for the adult family members than for the adolescent children this indicates that for the adolescents there is still more change and development in political preferences and therefore more room for external influence in this respect these results are clearly in line with political learning theory which underscores the important evolutions in political preferences that take place during adolescence and early adulthood the strong stability coefficient indicates that political preferences also for parties are already present at an early stage in life but the difference with the stability coefficients of the adult respondents indicates that there is still a margin for evolution and further crystallization of these preferences for ideological orientation one of the main control variables i saw the clear effects of both ideology at t1 and change in ideology over time changes in ideological orientation explained changes in propensity to vote for the leftist green party rightist flemish nationalist party and the radical right party for both adults and children indicating a stable relationship between both orientations change in leftright position did not at all influence changes in propensity to vote for the centrist christian democratic party as this is a centreright party with no strong outspoken rightist profile this is in line with what would be expected discussion the results of this study taught us more about the different political roles that mothers and fathers take on in the household fathers are more interested in politics follow the news more frequently and have a higher level of political efficacy than their female partners in this respect they take on the strongest political role within the family compared to their partners and children as h1 predicted interestingly not that much seems to have changed in the division of political labour between fathers and mothers in the past 50 years the tendencies i observed in the descriptive results were in line with the general picture that jennings and niemi painted using similar data from five decades ago my main objective was to investigate the extent to which mothers and fathers politically influence their children contrary to what i expected in light of some of the earliest socialization studies the few previous research efforts in this area mostly showed a pattern of maternal dominance which i followed in h2 in my longitudinal tests on changes in voting propensities i did not find any evidence of a clear pattern of maternal or paternal dominance the results from the structural equation model strongly pointed in the direction of a process of shared influence in which mothers and fathers equally contribute to the development of preferences for political parties among their adolescent children between partners we seemingly observed a process of mutual influence although these findings should be interpreted with a measure of caution as this could also be the result of a shared external influence couples also share the same social networks and communication environments which can influence them in the same way at the same time without them influencing each other this is an important alternative mechanism to keep in mind when interpreting these findings finally as expected the 15to 16yearold adolescents in the sample did not exert a stable direct influence on the voting propensities of their parents these two main findings offer several lessons about the political roles that parents take on within the household the common assumption that politics is a mans world is partly supported by my data as i do find that fathers are more engaged in conventional politics this stronger involvement in politics however does not give them a competitive advantage when it comes to causing their children to absorb their preferences for political parties the fact that the political influence of mothers and fathers is comparably strong does not mean that other dynamics do not take place adolescents are found to discuss party politics more often with their fathers which may lead to different socialization dynamics for instance the transmission from fathers to children might be the effect of political discussions while the transmission from mothers to children might be related to a stronger emotional attachment as was suggested in earlier socialization studies further disentangling these differences might prove a fruitful avenue for further research use of the 010 propensity to vote scale also raises additional questions around the influence of parents in the development of negative evaluations of political parties for instance in this study i focused on party support but this measure could also be used to study the development of negative evaluations in a similar model which might offer additional insights into the social identity approach to partisanship finally i started this article by underscoring the importance of testing the traditional socialization mechanisms studied in the 1960s and 1970s within the strong partisan system of the united states in a current dealigned democracy in this respect these results can teach us a lot about the applicability of these traditional transmission mechanisms in this new context from the belgian analyses we learned that despite the ongoing trend towards individualized voting behaviour it remains essential to take the immediate social network into account this is even true for one of the most fragmented multiparty settings in western europe and thus in a political system in which citizens are not born into a liberal or conservative family the partisan cues that family members send out to one another may be weakening and they will be less clearly observable in a multiparty setting but this does not mean that parental influence has become less important the young citizens in this study are not directly comparable to those jennings and niemi studied in the 1960s and 1970s in the strongly partisan us system nevertheless they also rely strongly on parental cues for instance to make sense of the complex political party system that they have to negotiate in light of these observations i argue that parental influence patterns should not merely be interpreted as the classical process of partisan inheritance within this specific european context i would instead suggest they be interpreted as a cognitive heuristic that adolescents apply to orient themselves in a complex multiparty setting notes 1 additional information concerning the specific sample was added to appendix 1 on the international political science review website 2 see online appendix 1 3 the full descriptive statistics for these variables can be consulted in online appendix 2 4 see online appendix 1 author biography joris boonen works as a researcher at the center for political research at the university of leuven where he obtained his phd in 2016 he also works as a lecturer in research methods at zuyd university of applied sciences in maastricht his research mainly focuses on the development of party preferences among adolescents

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introduction childhood obesity is now recognized as a global public health concern 1 because of the recent rise in obesity rates in both developed and developing countries 2 the obesity epidemic is thought to be driven largely by environmental and social factors 1 social patterning of obesity consistent with the theory of epidemiologic transition 3 has been described in adults 4 5 6 7 though research in children is more limited 48 for children the limited research on socioeconomic gradients in obesity has been conducted predominantly in developed countries with a preponderance of singlecountry studies and studies have used inconsistent measures of individual socioeconomic status and adiposity 468 these prior studies have highlighted inconsistent results across levels of development to our knowledge only one other published study 9 has investigated the relationship between a countrys economic level and socioeconomic differences in overweight based on a large multinational sample of children that study however failed to find a relationship in contrast to the current study the prior study used selfreported measures of body mass and height and did not include countries with low or middle levels of human development both low childhood ses 10 11 12 13 and childhood obesity 1415 impart significant future health consequences to address this current global epidemic and to plan for future health needs it is essential to understand how childhood obesity relates to ses across countries of varying levels of economic and social development thus the aim of this study was to describe the relationship between childhood obesity and household income using several objective measures of adiposity and to explore how this relationship might differ across a wide range of country human development materials and methods the international study of childhood obesity lifestyle and the environment iscole was a multinational crosssectional study that collected objectively measured height body mass and percentage body fat in 7341 children across 12 urbansuburban study sites the rational design and methods have been published in detail 16 each iscole study site was responsible for recruiting and enrolling at least 500 children a target sample size of 500 children per site was chosen based on a power calculation that suggested this size would provide 90 power to detect as significant predictors explaining 3 of the variability in body mass index 16 the primary sampling frame was schools which was typically stratified by an indicator of ses in order to maximize variability within sites 16 the institutional review board at the pennington biomedical research center approved the overarching iscole protocol and the institutional ethical review boards at each participating institution also approved the local protocol written informed consent was obtained from parents or legal guardians and child assent was obtained as required by the local institutionalethical review boards setting the 12 urbansuburban sites included in iscole represented countries ranging from low to very high country human development 17 data were collected from september 2011 through december 2013 data collection occurred during the school year and each site completed their data collection over a single 12month period across the study data collection proceeded in a staggered fashion with 25 sites engaged in data collection at any particular time participants iscole targeted 10yearold children and each study site determined the grade level to target that would ensure a sample with minimal variability around a mean age of 10 years all children within the targeted grade level in a sampled school were eligible to participate thus the sample necessarily included children aged 911 years a total of 7372 boys and girls participated in the iscole study of which 7341 remained in the analytic data set after excluding participants who did not have valid bmi measurement anthropometry all iscole sites collected objectively measured height body mass and percentage body fat according to a common protocol and all study personnel were required to complete a rigorous system of training and certification that included webbased training modules and regional inperson training meetings 16 standing height body mass and body fat percentage were measured using standard procedures and instrumentation across all study sites height was measured without shoes using a seca 213 portable stadiometer with the head in the frankfort plane body mass and body fat percentage were determined with a portable tanita sc240 bioelectrical impedance scale after all outer clothing heavy pocket items and shoes were removed each measurement was repeated and the average was used for analysis the bmi was calculated and bmi zscores were computed using ageand sexspecific reference data from the world health organization 18 participants were classified as obese or nonobese household income parents selfreported household income levels across eight to ten countryspecific categories determined by the study site within each country income was collapsed into four levels to facilitate multicountry analysis although not corresponding exactly to quartiles the four levels were created to ensure the most balanced distribution possible within each country country human development index the relationship between household income and adiposity was investigated across levels of human development measured by the 2011 hdi 17 values for the 2011 hdi corresponding to the 10th 50th and 90th percentiles within the iscole country sample were chosen to represent lower middle and higher levels of human development percentiles were calculated based on weighted averages the use of samplebased percentiles ensures that the results are not extrapolated beyond the sample hdi range and also reduces the likelihood of results being interpreted to correspond to specific countries in the sample treatment of missing data a total of 7372 children participated in iscole bmi was missing for 31 participants these participants were excluded from all analyses body fat percentage was missing for an additional 76 participants analysis of this outcome was conducted among participants with nonmissing data overall 810 participants were missing data on household income four sites had missing income data in excess of 10 the united kingdom brazil portugal and south africa participants missing income data were similar to those with complete data with respect to sex age obesity bmi zscore and body fat percentage missing values for income were multiply imputed to reduce the chance of bias owing to exclusion of the cases with missing income data missing values were multiply imputed using fully conditional specification methods under missingatrandom assumptions 19 and using sas version 93 countryspecific models were used to impute income categories which were subsequently collapsed into the four income levels as described above statistical analysis multilevel randomeffects models that accounted for clustering at both the school and country levels were used to examine income gradients in the various obesity measures denominator degrees of freedom for statistical tests pertaining to fixed effects were calculated using the kenward and roger approximation 20 interactions were used to test for differences in the incomeobesity relationship across hdi levels and for differences between boys and girls for presentation leastsquare means for the obesity measures were estimated separately for boys and girls at values corresponding to the 10th 50th and 90th percentiles for the 2011 hdi within the iscole sample linear regression slopesasoutcome models overall and by sex with the countryspecific sesobesity slope as the outcome and hdi as the predictor were used to investigate the association of hdi with the betweencountry differences in the sesobesity relationships to properly account for the multiply imputed income data results from all statistical analyses were averaged across the five imputed data sets and the standard errors were adjusted using the mianalyze procedure in sas sensitivity analyses were used to compare results from imputed data sets to those from analyses of participants with complete data and results were similar results descriptive characteristics of the study sample stratified by sex and study site are provided in table 1 the mean age of the children was 104 years and 126 of children were obese which ranged from 54 to 238 iscole study sites represented all inhabited continents and levels of human development ranging from low to very high for both boys and girls obesity was positively associated with income at lower levels of hdi and negatively associated with income at higher levels of hdi there was a significant interaction between obesity prevalence and hdi in both boys and girls but no indication of different relationships between the two groups furthermore this patternthat the income gradient in obesity reverses itself as one moves from lowtohigh levels of developmentwas consistent across all measures of adiposity for all adiposity measures there was a significant interaction with hdi body fat girls bmi zscore body fat however there was no indication of different income gradients for boys and girls finally across successively higher levels of country human development obesity levels decline in the highest income group whereas they increase in the lowest income group our analysis reveals a very strong negative relationship between hdi and the countryspecific incomeobesity gradients across countries hdi explained 75 of the variation in the countryspecific incomeobesity relationships the relationships were similar in boys and girls the incomeobesity gradient is estimated to be zero for countries near a 2011 hdi of 076 with positive income gradients in obesity at lower levels of development and negative income gradients at higher levels in stratified analysis bmi zscore was significantly associated with income in six of the twelve iscole countries discussion this is the first study of childhood obesity that included children from countries of low to very high levels of human development that collected objective anthropometric measures and that collected these measures according to a common protocol results demonstrated a strong relationship between childhood obesity and income which is modified by the level of a countrys development for both boys and girls obesity prevalence body fat percentage and bmi zscore were positively associated with income at lower levels of human development and negatively associated with income at higher levels of development for children the limited research on socioeconomic gradients in obesity has been conducted predominantly in developed countries with a preponderance of singlecountry studies and studies have used inconsistent measures of individual ses and adiposity precluding metaanalyses 468 these prior studies have highlighted inconsistent results across levels of development results from the current study show that for countries with moderate levels of human development in which the income gradient would be plateauing before reversing income gradients are generally nonsignificant this observation could help to explain the inconsistent results from prior studies while also placing them within a clear pattern of incomeobesity gradients across levels of country development to our knowledge only one other published study 9 has investigated the relationship between a countrys economic level and levels of socioeconomic differences in overweight based on a large multinational sample of children that study however failed to find a relationship in contrast to the current study the prior study used selfreported measures of body mass and height and represented countries with more limited variability in human development if the current analysis had been restricted to sites with comparable levels of human development we would also have failed to identify the strong relationship between human development and income gradients in obesity reinforcing the importance of including lessdeveloped countries in this research our results are consistent with the theory of epidemiologic transition which characterizes changes across levels of a countrys development in patterns of morbidity and mortality from infectious causes to chronic and manmade diseases 3 with respect to obesity the epidemiologic transition encompasses both dietary changes and changes in physical activity often referred to as the nutrition transition 21 and the physical activity transition 22 the epidemiologic transition predicts a social patterning of obesity in countries in transition such that groups with higher income standards of living and levels of nutrition shift first resulting in higher levels of obesity compared with the lowerincome groups 3 furthermore in these settings obesity may be valued as an indicator of relative affluence reinforcing the prevalence of obesity in the higherincome groups as a countrys development increases food scarcity famine and malnutrition become less common such that the lowerincome groups experience less malnutrition increasing their relative adiposity the lack of a consistent relationship between income and obesity in midhdi countries may be related to increased access to lowcost energydense foods coupled with the necessity of physically intense labor among the lowincome groups resulting in an increased obesity prevalence approaching that of highincome populations in these countries then as countries complete the transition to a more western modern lifestyle and standards of living increase overfeeding and being less active become economically possible at high hdi the incomeobesity gradient shifts with the lowerincome groups experiencing higher levels of obesity potentially related to lower costs of energydense foods 23 and decreased access to safe places to be physically active 2425 the incidence of major cardiovascular events is currently highest in lowincome countries despite lower levels of obesity 26 at present policies in most lowand midhdi countries favor prevention of undernutrition and only some countries have implemented policies to prevent obesity 27 consequently as childhood obesity levels increase globally lowerincome countries will be more impacted by cardiovascular disease and associated medical and social costs also as global development increases poorer segments of the population are projected to see the highest increases in obesity further compounding the global burden of cardiovascular disease a particular strength of the current research is the wide variability in levels of human development present in the country sample and the analysis of objective obesity data collected under a rigorous common protocol as such the iscole sample provides clearer insights into how social determinants of health 2829 may be impacting childhood obesity globally the iscole sample was limited to children in urban and suburban settings so results may not generalize to rural settings however this aspect of the study design also prevents confounding by the extent of urbanization on the estimated relationships recent research in adults suggests that urbanrural differences in obesity seen in lessdeveloped countries may be mainly attributable to ses 30 so our results may be relevant for rural settings as well in conclusion childhood obesity prevalence is related to household income though the strength and direction of this relationship differs according a countrys level of human development consequently as childhood obesity levels continue to rise it will be important to account for socioeconomic factors within a countrys context in the global effort to control the epidemic this effort should include a better understanding of socioeconomic gradients in specific behaviors that contribute to obesity namely diet physical activity and sedentary behavior finally as global development increases poorer segments of the population are projected to see the highest increases in obesity conflict of interest mf has received an honorarium for speaking for merck ak has been a member of the advisory boards of dupont and mccain foods vm is a member of the scientific advisory board of actigraph and has received an honorarium for speaking for the cocacola company to has received an honorarium for speaking for the cocacola company the remaining authors declare no conflict of interest

childhood obesity is now recognized as a global public health issue social patterning of obesity consistent with the theory of epidemiologic transition has not been well described in children and the limited research has focused on developed settings the aim of this study was to describe the relationship between childhood obesity and household income using objective measures of adiposity and to explore how this relationship differs across levels of country human developmentthe international study of childhood obesity lifestyle and the environment iscole was a multinational crosssectional study conducted in 12 urbansuburban study sites that represented all inhabited continents and wide ranges of development iscole collected objectively measured height body mass and percentage body fat in 7341 10yearold children multilevel randomeffects models were used to examine income gradients in several obesity measures results the mean age of the children was 104 years and 126 were obese ranging from 54 finland to 238 china for both boys and girls obesity prevalence body fat percentage and body mass index bmi zscore increased linearly with higher income at lower levels of development all p for trend ⩽ 00012 but decreased linearly with higher income at higher levels of development all p for trend ⩽ 00003 country human development explained 75 of the variation in the countryspecific incomeobesity relationships r 087 p 00003 conclusions results are consistent with the theory of epidemiologic transition global efforts to control obesity must account for socioeconomic factors within a countrys context future research should seek to understand global socioeconomic patterns in obesityrelated lifestyle behaviors

introduction heart failure is a complex clinical illness which is brought on by a structural or functional impairment of ventricular filling or blood ejection 1 heart failure is a widespread problem that has serious consequences for public health according to a global health data exchange report the current global prevalence of hf is 6434 million cases 2 in the united states of america hf affects 6 million adults 34 in the united kingdom hf affects 900000 annually is predominantly a disease of older people and affects at least 5 of those aged 75 years old rising to 15 in very old people 5 in subsaharan africa hf is linked to high rates of recurrent hospitalization morbidity and mortality poor quality of life and lost economic productivity 6 the majority of young and prosperous adults are affected with hf 67 with 75 of cases in 2005 being nonischemic 7 tanzania is experiencing an increase in the prevalence of cvd and among cvds hf is linked to high mortality low life expectancy and high rates of rehospitalization 8 it is estimated that 37 of hospital admissions are related to hf and governments spend about 1 of their overall budget on hf management 9 prospective cohort studies of hf at two major hospitals in tanzania showed 1year mortality rates of more than 20 10 hospital readmissions of patients with hf within a short period of time are of concern and socioeconomic factors like poverty living in lowincome areas or a lack of social support have been observed as factors associated with readmission treatment costs are a financial burden for patients and health systems and in tanzania an estimated 19 million was used for hf treatment 11 heart diseases including hf are common in tanzania 12 contrary to developed nations where ischemic heart disease predominates tanzanias leading contributor to hf is hypertension this emphasizes the importance of early detection and treatment of hypertension anaemia atrial fibrillation and a lack of education are modifiable predictors of mortality 12 family and friends participate in the management of patients with hf 4 patients with hf usually depend on family members to carry out everyday tasks and manage their treatment process due to their poor physical and cognitive health 413 to maintain patients adherence and selfcare behaviour family caregivers play a crucial role in communitybased hf management which requires a significant time and energy investment 14 families are anticipated to play a bigger part in the healthcare system 15 patients with hf rely on family caregivers for help with selfcare behaviours and daytoday monitoring of health status the prolonged delay in attendance to healthcare facilities among patients indicates ineffective support from family caregivers 16 although progress has been made in studying and documenting the experiences of family caregivers in caring for patients with hf 14 up to date there is limited information on the experiences of the family caregiver in caring for patients with hf in the tanzania context highquality care for hf patients includes effective support from family caregivers 17 therefore we aimed to explore the experience of family caregivers in caring for patients with hf admitted at jkci in dar es salaam tanzania materials and methods study setting the study was conducted at jakaya kikwete cardiac institute in dar es salaam tanzania jkci is a nationally recognized teaching hospital with a focus on cardiovascular treatment education and research the institute can accommodate 120 patients and on average there are 700 outpatients and 100 inpatients each week with different heart conditions including hf 18 this facilitated easy access to the study participants design the study employed a qualitative descriptive design to explore the experiences of family caregivers this kind of research design is mostly used in investigating a problem that has not been clearly defined 19 it was also important to use this design to obtain information useful in designing others studies also it is important to note that the design was selected to enhance interaction between the researcher and family caregivers of patients with hf admitted at jkci this interaction helped the researcher to learn from the caregivers perspectives study participants the participants of this study were family caregivers of patients with hf admitted at jkci we use the term caregiver as anyone who cares unpaid for a friend or family member who due to illness cannot cope without their support in this context any family member spouse friend or neighbour who had a close personal bond with patients with hf and offered a wide range of support was referred to as a family caregiver family caregivers who had a patient admitted and had stayed with the patient for 14 days and above while receiving treatment at the hospital able to understand and speak swahili were included in the study as they would be able to reflect on what they had learnt formally and informally and identify any gaps in current service provision family caregivers who were stressed or mentally disturbed during the time of the interview were excluded because they could not provide adequate information as most of the time they thought about their patients sampling methods and procedure a purposive sampling method was used to obtain the study participants in this technique participants with rich information about caring for their patients were selected to participate this process suits the purpose of the study 20 the participants were approached during patients visiting hours and requested to make an appointment for the data collection at their convenient time and place the wards in charge who was conversant with participants eligibility criteria were asked to identify potential participants a total of sixteen family caregivers were approached in six of them rejected being involved in this study for the reason they were in hurry to care for their patients and some felt like not talkinga sample of 10 participants was considered sufficient further additional participants could lead to the accumulation of unnecessary information 21 the sample size was sufficient to provide information that helped in meeting the objectives of the study while at the same time ensuring the timely accomplishment of the study data collection data were collected using indepth interviews this method provides a deep understanding of a subject under study 22 the data collection took place from april to may 2022 before data collection the first author who is a nursing officer and a researcher with experience in interviews and taking patients histories developed an interview guide in response to specific objectives the guide helped to capture the reality and nature of the research question being studied the questions were developed from reviewed literature although other questions were raised during the interview as probing questions the probing questions were prepared to deepen the understanding of the information which caregivers provided the question in the interview guide includes what are your needs as a caregiver of a patient with hf what challenges do you face in caring for your patient with hf and what support do you get from nurses when it comes to caring for patients with hf the use of probes helped to get more clarification upon what the participants said and it allowed flexibility and room for extra questions which were not reflected in the guide but still focused on the same topic the interview took place at the hospital premises in the small room that the first author booked for the interview the room was big enough allowing participants free expression and good sitting arrangement it was also wellventilated and had good lighting to allow us to observe nonverbal expressions furthermore the room is situated away from the wards and opd and thereby providing a quiet and calm environment for the interview process the first author conducted all the interviews data were collected using a digital voice recorder and all participants accepted to be recorded the interview questions were modified slightly based on new emerging information from the participants the duration of the interview was between 30 to 45 minutes and the interviews were conducted in the swahili language data analysis the analysis of data started just after the first interview before analysis all the recorded information was transcribed verbatim to keep the original meaning of the information 23 the first author and the research assistant transcribed the interviews the transcribed information was also checked for consistency from the audio data a few omissions of information and typos were corrected accordingly the authors read and reread the field notes and transcribed data until they had a firm grasp of the data gathered toandback translation of transcripts from swahili to english as proposed by braun and clarke 24 was done to ensure that no information is lost during the process 25 the thematic analysis approach was employed during data analysis as guided by braun and clarke 2006 this analytical approach was used because we wanted to find out about views opinions and experiences from the perspectives of family caregivers 24 in this analysis the first author coded the data manually this was chosen because the sample size was small and therefore manageable in the available time the generation of initial codes involved data reduction by the creation of categories that represented the meanings existing in the data segments initial codes were produced through terminologies participants used during the interview and used as a reference point for their experiences during the interview these codes facilitated the researchers ability to locate pieces of data later in the process concepts were developed by observing pertinent phenomena in the context of the studys goals by incorporating eliminating merging or splitting potential codes we improved codes searching for themes began when all data were initially coded and collated and a list of different codes was identified across the data set we used tables to write and name each code and a brief description on a separate piece of paper and played around with organizing them into themes individual themes were compared to ensure that they are mutually exclusive from each other we reviewed and refined the developed themes in this aspect we read all the collated extracts for each theme and considered whether they appear to form a coherent pattern this involved ensuring the validity of individual themes to the data set but also assessing whether the candidate theme accurately reflected the meanings in the data set as a whole or not we then defined and named the themes and subthemes ethical considerations the research ethics committee of muhimbili university of health and allied sciences approved the study with ref no muhasrec0320221057 the permission to collect the data was obtained from the head of research training and consultancy of jkci with ref no ab12330701g50 a signed written informed consent was obtained from every participant before enrolling in the study the significance of the study was explained to participants who were then requested to give informed consent and engaged willingly in the study participants were informed of the right to leave the study at any time whenever they wished to additionally participants were informed that there would be no consequences for choosing to withdraw or decline to participate findings sociodemographic characteristics of participants ten participants were included in this study six of the participants were females while four were males those under 40 years old accounted for 5 and the rest were above 40 years old four participants were single five were married and one was a widow participants educational levels were as follows five had primary education three had secondary education and two had higher education three participants were employed five were selfemployed and two were unemployed themes and subthemes three themes emerged in this study namely high demand for caring support new caring role and lifestyle challenges and professional support demand for supportive care family caregivers reported that caring for patients with hf require their time and financial stability as patient demand a lot of things this theme is explained under two subthemes the need for social support and the need for financial support the need for social support participants reported requiring help to ease their caring responsibilities they expressed that they need assistance from friends and family members to facilitate a caring role they also added that feeling lonely while caring for their patients was one of the obstacles to providing effective care to their patients as stated below by one of the participants i need someone to help me to take care of the patient for now there is no one to help me in this task i wish there was someone to help me also participants explained that they needed someone to help them to get capital so that they could do small businesses to sustain their lives and caring responsibilities one of the participants said for now i need capital so that i can do small businesses to sustain my life i can do the light jobs like cooking samosa and mandazi at least i can improve my life the need for financial support a participant expressed facing financial difficulties that make them fail to meet the daily needs that facilitate caring roles financial difficulties were reported as a challenge as they needed money to cover various bills and life needs one of the participants revealed that for me ill say the challenge i get is money issues if you dont have the money you wont be able to pay for a bed when you get to the hospital you pay there i came here a month ago and i stayed for many days i got the bill and i knew it was for the bed and the medical costs i told him i dont have the money again participants expressed that a lack of money was an obstacle in taking patients to regular clinics for checkups and they sometimes had to postpone until they could get money which could take time they did not have any money to pay for transport to the hospital as one of the participants described the challenge is that it can reach the day of clinic and you dont have any money in your pockets and the patient is so sick that she cannot walk on foot so you have to delay going to the clinic new caring role and lifestyle challenges new caring roles emerged because their patients needed continuous support in this case the participants had to readjust their lifestyle and responsibilities of daily living this posed challenges in fulfilling the two roles and responsivities at the same time hence failing to provide the required care to their patients at the right time they also expressed failing to participate in social events and caring in an unfavourable environment learning to provide the required care at the right time participants asserted that their patients were dependent and that they required assistance to meet their daily needs however they expressed that the caring tasks were difficult when the patient becomes obese making it a challenge to manage the patient alone one participant said a patient with a heart condition sometimes requires you to lift him so that he can move or do something and my patient has become heavy making it difficult for me to lift him alone and i am worried my health could be at risk too also participants stated that patients with hf require ongoing care from them they added that patients required constant attention because their conditions could change at any time and become worse this made them worried that they could lose their beloved ones at any time one of the participants reported that the patient may experience difficulty in breathing sometimes feel palpitation this condition disturbs me and you know i dont have equipment that can help the patient to breathe failing to participate in social events participants described that participation and engagement in their community activities had decreased they reported that their relationships with their communities have been strained as a result of their responsibilities to their patients they determined that they do not have time to leave their patients alone one of the participants stated i dont get time to participate we had a patient at a certain hospital he died and was buried in my region but i could not attend the burial because of my patients condition he is a man you cannot leave for a minute i am with him all the time also participants reported that due to their caring role it was difficult for them to attend social events such as ceremonies because their patients needed them all the time one of the participants said it is not easy for sure i cannot leave my patient that i should leave the hospital to attend a wedding ceremony i cannot go anywhere i am just here with my patient caring in an unfavourable environment participants expressed being subjected to a risky and infectious environment when caring for their patients they explained that there was no toilet specific for caregivers that necessitated them to use the same toilet with the patients from their perspectives this phenomenon was putting them at risk of contracting various diseases as stated by the participant below that is we caregivers who are here are very vulnerable to our health because even the toilets for caregivers are not there i recently felt my body was weak and every body part was aching aside from the unfavourable environment in the hospital toilets participants noted that there was no official place for caregivers to sleep at night this caused them to sleep while seated on chairs or the floor or not sleep at all during the night this made them feel ill because they felt exhausted and experienced generalized body pains one participant elaborated at the hospital there is no official place to sleep as caregivers we find it difficult to sleep and we sit on chairs like this and take a nap there is no place for you to say you would lie down for a while professional support in the caring role the family caregiver needs support from a health care professional as handling patients with hf needs skills and knowledge on what to do to improve the patients quality of life caregivers reported that compliance with professional instruction and effective nursecaregiver interaction is an outcome of good support from professionals compliance with professional instruction participants stated that information provided by nurses and other health care providers in the hospital was useful for their patients and for them to improve the care that they delivered they explained that they were told how to feed their patients give medication to their patients in an emergency before they arrive at the hospital and how perform simple physical exercises one participant expressed that they tell you the dos and donts if the patient has defecated wear gloves for example my patient refused to eat for about five days they inserted a nasogastric tube into the patient and they directed me on how to feed her they would feed her three times a day i learned how to do it but they still kept coming to feed her for they can get an emergency i learned and so far i can feed her myself the participants also stated that they had received medical advice from nurses regarding dietary and lifestyle modifications maintaining followup appointments and completing prescription treatments as directed this was important for the betterment of the patients as in the following participants expression instructions you can probably be told to insist on him what the patient should eat monitor the food he is assigned to eat treatment and medication compliance that is the instructions we are given including how to exercise moreover participants appreciated the information provided by nurses and stated that the information not only was beneficial to the patients but also to them one participant revealed that they come telling you this patient should not be given something this patient is not this and that therefore they give you a lot of things that help you as a caregiver and im directed to use medication that helps my patient effective nursecaregiver interaction participants reported enjoying the qualities of nursing care at the jkci they mentioned that nurses were so collaborative that they responded quickly whenever they were called for help which gave them hope and confidence whenever they needed help one participant expressed that i have stayed at the hospital for a long time i am grateful for this hospital they have given me a lot of support the patient was in a bad condition but now he is at least okay without them we could have not reached this day also nurses came together and formed a team to solve patient care and other healthrelated issues to improve patient care quality nurses taught caregivers psychology to improve patient health outcomes through good communication and daily relationship building at the same time participants appreciated the collaboration from nurses and one of the participants expressed that you tell them this they listen to you and take care of your patient well you wish they could continue the service and we keep in touch they dont help me economically but emotionally and psychologically it helps because you have confidence what my patient is given gets cured discussion this study explored the experience of family caregivers for patients with hf it is revealed that caregivers needed social and financial support to facilitate the caring process learning to provide the required care at the right time was the new role acquired by caregivers failing to participate in social events and caregiving in an unfavourable environment were reported as challenges in caregiving however compliance with instruction and effective interaction among the nurses and caregivers were considered to be positive professional support support from family and friends in caring for patients with heart failure is a common social phenomenon as it brings relief to the caregivers and a feeling of wellbeing 15 in our findings the lack of social and financial support from family members and friends indicates that the support system of families is decreasing these findings are consistent with the findings of chi et al who found it difficult to balance caregiving with other responsibilities and find time to manage their quality of life 26 also the findings in this study are consistent with the study by dionneodom et al who reported that caregivers had low familial social support 27 however there are other factors such as relationship patterns among caregivers patients and other family members as well as poverty among family members that need further exploration to arrive at a solid conclusion caregivers of hf patients who participated in this study needed help from friends and families in their caregiving role caring for patients with hf was a difficult task that needs the devotion to undertake and most of the time the ones who are passionate to help get involved in caring for patients with hf caregivers of patients with hf needed to engage in various social activities but couldnt find the time because they spent most of their time with their patients this discovery supports earlier findings in nigeria and ghana where the caregiving role affected caregivers social engagement 2829 doherty et al and wingham et al reported similar findings 3031 according to this study caregivers of hf patients demand financial stability they are required to pay hospital bills and buy medicines prescribed to their patients they failed to do so and this caused inadequate patient care according to this study a lack of money caused clinic visits to be delayed or even missed entirely the findings in this study relate to a study which was done in china that reported that lack of money contributed to inadequate care for patients with hf 32 likewise a study by grants and graven in england revealed a lack of financial wellbeing was among the challenges faced by caregivers 33 and a study in zambia by musonda et al reported a lack of supporting resources being among the challenges faced by caregivers 34 the result is similar as both studies used a noninformal caregiver of a patient with hf and data was collected using a crosssectional study design and qualitative study design where data was obtained once so it was easy for family caregivers to verbalize their challenges therefore there is a need for providing adequate support to the family caregiver by identifying and evaluating their needs so that appropriate intervention could be designed to support caregivers and consider an urgent priority also in this study participants reported learning to provide required care at the right time an hf patients condition can change anytime and a patient may experience difficulty in breathing and palpitations in this case a family caregiver may not know what to do to save the lives of their beloved ones this made caregivers do not leave as their patients condition could change at any time and their assistance could be of great help these findings are consistent with a study by kim and colleagues in korea which reported similar findings 14 again caregivers reported that it was difficult to estimate how long the situation could last fearing that the patient could die these findings are similar to the study by tang in china who reported that caring for somebody with a chronic illness makes caregivers worry and fear that the patient is near death and could die at any time 35 furthermore in this study an unfavourable caring environment while patients are in the hospital has been reported this may be explained by the fact that social services in the hospital are not adequate the lack of a formal place for caregivers to rest and sleep at night while they are in the hospital was a distressing phenomenon other studies have reported similar findings for example chukwu and colleagues study in nigeria found infrastructure and amenity deficiencies 28 while in uganda inadequate accommodation sanitation and the lack of running water were reported as challenges faced by caregivers at the hospital 36 in this study support to the family caregivers of patients with hf was important as caregivers reported to have compliance with professional instruction which helped them in caring for their patients with hf the findings in this study are consistent with the study in the united kingdom that reported support to caregivers was provided with useful information from nurses 31 however the findings of our study differ from studies done in nigeria and iran where caregivers reported receiving inadequate support and little guidance from healthcare workers in their caregiving roles 1328 another study done in norway reported that caregivers of patients with hf received insufficient information at the time of discharge from healthcare providers which made caregivers and their patients live unhealthy life and led to multiple readmission 15 the findings in this study might be used to develop strategies and policies which can be used to address the challenges caregivers face when caring for their patients including providing nurses with education which will enhance them to provide sufficient information to caregivers to improve the wellbeing of the patient and their caregivers limitations caregivers interviewed were those who only managed to come to the hospital for treatment and those who were home researchers did not manage to explore their experience so the experience was not broadly explored therefore further studies have to be carried out to explore the experience of family caregivers especially those who are at home there was a chance that the participants original meaning would not be preserved in the swahilitoenglish translation of the transcript the researcher employed language specialists who are conversant in both swahili and english to lessen this prejudice the transcripts of the audiotapes were translated into english and compared to the swahili transcript for verification conclusion the goal of this study was to explore the experiences of the family caregivers of hf patients caregivers need social and financial support to provide effective care to their patients caregiving is a learning process that needs continuous educational support to adapt to the new caring roles and challenges nurses should conduct regular assessments to explore caregivers needs challenges and concerns and provide timely counselling that can facilitate coping data regarding participants information has been provided in supporting information a dataset has been attached tarimo

heart failure hf continues to be a global health problem with its ramifications more pronounced in underdeveloped countries family members play a pivotal part in patient management which may influence the patients overall quality of life prolonged delay in attendance to health care facilities among patients indicates ineffective support from family caregivers in the tanzanian context there is limited information about the experiences of family caregivers in caring for patients with hf this study explored family caregivers experiences in caring for hf patientsa qualitative descriptive study design was conducted at jakaya kikwete cardiac institute in dar es salaam tanzania a purposive sampling technique was used to select the potential participants a sample size of 10 family caregivers of patients with hf was included in the study thematic analysis was used to derive the main theme and subthemesthree major themes were identified demands for supportive care new caring role and lifestyle and professional support in caring for patients with hf caregivers needed social and financial support to facilitate the caring process learning to provide the required care at the right time was the new role acquired by caregivers while failing to participate in social events and caregiving in an unfavourable environment were reported as challenges in caregiving however compliance with instruction and effective interaction among the nurses and caregivers were considered to be positive professional support

women to enter some stem fields gender scholars have attributed such patterns to strongly held cultural beliefs that men and women possess some interests and skills that are fundamentally different so that particular fields of study and related occupations are considered highly suited for one gender but not the other such gender essentialist beliefs undergird gender stereotypes about womens and girls inferior mathematical skills that for instance supposedly make them less suited for fields like engineering similarly beliefs about mens and boys relative lack of nurturing ability underlie the socialization processes that discourage young men from expressing an interest in caregiving or otheroriented behavior often associated with fields such as nursing thus cultural beliefs about gender contribute to educational and ultimately occupational segregation by discouraging multitudes of young men and women from even considering let alone choosing to enter certain fields of study but what about those young men and women who make decisions at odds with prevailing gender scripts by entering nontraditional fields in college to what extent are they dissuaded from persistence in the major that they have chosen in order to successfully disrupt gender segregation we need a clear understanding of whether and when those individuals who intend to follow nonnormative paths are deterred from doing so examining nonnormative choices in college is particularly important because college represents a setting where gender norms are particularly salient and the choices individuals make about their college major have strong implications for their subsequent occupations those individuals who enter fields dominated by the other gender in college have the power to decrease educational and occupational segregation only if they remain on their chosen path during college thus our study focuses on a nationally representative sample of us college students to determine whether or not choices to pursue genderatypical majors are largely corrected during the college years such that women who choose maledominated fields of study are more likely to switch fields than their female peers in other majors likewise we explore whether a similar pattern exists among men such that men who enter femaledominated majors are more likely to subsequently switch fields compared to their male peers who have chosen fields that are not atypical by addressing these questions our study contributes new knowledge about the extent to which college is a critical place and time for discouraging the choices of young men or young women who attempt to defy norms regarding genderappropriate fields in focusing on this critical issue our study moves beyond the limitations of previous research specifically a primary focus of extant research on those who enter nontraditional majors is on women in stem majors typically comparing women in these fields to men in the same fields several recent national studies provide promising empirical evidence that women in many stem fields now persist towards degrees at the same rate as men however this news does not answer the question of whether women in such maledominated fields have higher switching rates than women in other fields if in fact the latter is true this finding would suggest that women in these genderatypical fields still face strong deterrents to attaining their desired degree not encountered by their female peers who have chosen socially safer majors that do not transgress gender norms this withingender comparison is a primary focus of our paper additionally the pathways of men who enter femaledominated undergraduate fields in college remain mostly unexamined in the research literature which is problematic because the choices of men are as critical as those of women for upholding the structure of gender segregation although there is a small but growing body of research exploring mens experiences and persistence within femaledominated occupations research on mens persistence during the undergraduate preparatory stages for such occupations is scarce our paper addresses this important issue and as such provides new evidence regarding the extent to which college is a critical point of deterrence for the pursuit of genderatypical fields for men therefore our study improves upon the limitations of past research by examining both womens and mens persistence in postsecondary majors where they represent the minority gender as well as considering withingender comparisons thus providing a more complete picture of gender inequality in us higher education drawing on prior theoretical and empirical research conducted on gender inequality in education as well as occupations we expect that although men and women who choose genderatypical majors have already had to successfully navigate many obstacles to their nonnormative choices to get this far they are still subject to the consequences of prevailing cultural beliefs about appropriate roles for men and women and therefore face deterrents that make them more likely than their samegender peers in more normative majors to decide to switch fields in the following sections we first discuss how theories of chilly climate and stereotype threat predict that women in maledominated fields will have strong reasons to switch majors and then we turn to discuss how theories of gender devaluation predict that men in femaledominated fields also face strong obstacles that make switching a likely outcome thus we anticipate that both men and women whose choice of college major transgresses gender norms about what is appropriate are more likely to switch fields than their samegender peers in other majors but for different reasons our empirical analysis utilizes a nationally representative dataset with a recent cohort of us college students the beginning postsecondary students longitudinal study along with logistic regression to examine students switching decisions our analyses include key controls for students social and academic backgrounds because as we discuss later such factors could confound the relationship between the choice of an atypical major and subsequent decisions to switch or stay to further ensure the robustness of our results we also consider alternative specifications of both our key independent and dependent variables through a rigorous quantitative focus on both women and men who have initially chosen to enter a field where they are clearly the gender minority our study offers empirical evidence that contributes to our understanding of the maintenance of gender segregation deterrents to womens persistence perhaps the most prominent explanation for why women would be likely to leave a field where they are the gender minority focuses on the idea of a chilly climate this term was originally coined by sandler and hall to describe how classrooms could be uncomfortable and discouraging places for women because of differential expectations and treatment from faculty and peers in educational settings where they are highly visible as the gender minority such as within stem college classrooms prevailing cultural beliefs about women not being as wellsuited to succeed in mathrelated fields because of their innately inferior ability or lack of competitive drive can result in a climate that is chilly because of overt and intentional acts such as disparaging comments made about womens intellectual abilities or less overt but nonetheless discriminatory behaviors such as minimal effort made to include women in discussions or related class activities typically utilizing samples of college students at single universities both quantitative and qualitative studies provide evidence of negative treatment of female students in many stem fields by faculty as well as by their male peers that is subsequently linked to womens lower confidence in performance or belonging thus there is reason to expect that women in these maledominated fields must confront a negative classroom climate that their female peers in other fields do not have to face thereby suggesting that women in the former group in their search for a more hospitable and supportive learning environment would be more likely to switch majors than those in the latter an additional yet related factor that might prompt women to switch out of genderatypical fields at high rates is offered by the theory of stereotype threat even if a classroom is neither hostile nor alienating its composition or normative climate may nevertheless prime gender stereotypes about mens and womens natural abilities and predilections given the prevalence and persistence of stereotypes of womens inferior ability in math and related fields found even among scientists at elite universities it is likely that women in maledominated stem fields are either consciously or subconsciously concerned with fulfilling stereotypes of lower performance stereotype threat would not necessarily result in women earning lower grades than men in such fields and indeed there is evidence that they have comparable grades but rather this threat could impact other important outcomes for example a recent study of undergraduates majoring in stem fields found that exposure to genderstereotypic cues led to womens lower selfefficacy and identification with stem similarly a study of college students at a highly selective university found that exposure to gender stem stereotypes decreased womens sense of belonging in math which the authors then linked to a lower desire to pursue math in the future although the literature on stereotype threat is often experimental with cues specifically manipulated by researchers there is ample evidence that women who enter such maledominated fields are very likely to be exposed to gender stereotypes that decrease their desire to persist which could plausibly result in higher switching rates than those of women in other fields deterrents to mens persistence whereas chilly climate and stereotype threat theories suggest that women in maledominated majors face particular obstacles not confronted by their female peers in more gender normative majors and subsequently may have comparatively higher switching rates neither of these theories is likely to apply to men specifically men are likely to experience a positive difference in femaledominated environments both theoretical and empirical research supports the idea that men take their gender advantage with them when they enter femaledominated occupations translating it into higher pay and other positive outcomes such as increased attention and support the same is likely true in femaledominated majors for example male education majors may be considered desirable by classmates and faculty who feel that the legitimacy of their field is actually increased by the presence of men and who view the potentially different male perspective as something enriching in a context that values both diversity and community yet there are strong reasons to expect that men in femaledominated majors must confront deterrents to persistence not faced by their male peers in other fields as a consequence of cultural beliefs about mens comparatively higher social status specifically theories of gender devaluation suggest that men who have chosen femaledominated fields are stigmatized because the sphere they are entering is relatively devalued and linked to lower future income they have other highstatus options and they appear to be rejecting the generally higher social status attributed to men and boys evidence from research on occupations suggests that if a field is identified with women men working there are likely to experience substantial discrimination by those outside the field williams argues that the most compelling evidence of discrimination against men in femaledominated professions is related to their dealings with the public who view them as wimpy asexual feminine or passive these findings have clear implications for college men who have chosen a femaledominated major because they are violating dominant discourses of gender at a point in the life course where pressures to conform to hegemonic masculinity may be particularly intense thus men in femaledominated majors are likely subject to comparatively greater social sanctions from peers friends and adults than their male peers in other fields even in the absence of direct sanctions the persistence of men in predominantly female fields may be deterred by anxiety about what others think about their masculine status finally theories of gender devaluation point to the lower incomes associated with highly feminized occupations even net of the education and skills required to the extent that femaledominated majors lead to lowerearning occupations male college students in these fields may become increasingly concerned with the financial implications of their nontraditional choice the salience of prevailing cultural beliefs regarding mens primary adult role as a moneyearner and breadwinner are perhaps heightened as they move closer to the point of occupational entry and are reminded of this normative gender role by parents and others thereby encouraging them to abandon their initial choice the present study in sum theories of chilly climate and stereotype threat suggest that women in maledominated fields confront distinct obstacles not faced by their female peers in more typical fields and subsequently will have comparatively higher switching rates additionally theories of gender devaluation suggest that compared to their male peers who enter other fields men in femaledominated fields face particularly strong deterrents from others to persist in their chosen field therefore it is likely that both men and women in atypical fields dominated by the other gender are more likely to switch fields compared to their samegender peers in other fieldsbut for different reasons in summary we will test two hypotheses men who enter femaledominated majors will be more likely to switch fields than their male peers in other majors and women who enter maledominated majors will be more likely to switch fields than their female peers in other majors to test these hypotheses regarding switching decisions we utilized logistic regression analyses of a nationally representative sample of us college students to ensure the robustness of our results we considered several aspects of students social and academic background that have previously been identified as influencing the gender composition of students initial major andor their decisions to switch majors first some prior research finds that higher social class families tend to promote gender egalitarianism and therefore they may raise children who are more inclined to pursue genderatypical majors students from higher social class families are also likely to have greater access to information before they enter college regarding the details and requirements of different fields of study which could potentially lead to more certainty in the choice of a major and less overall likelihood of switching fields for these reasons we include measures of parents education and family incomes as proxies for social class in our models additionally prior research offers evidence that the endorsement of traditional gender stereotypes and correspondingly decisions that transgress traditional gender norms may vary by raceethnicity for example some studies have found that black women are more likely than their white peers to express interest in maledominated fields such as engineering whereas hispanic women are less likely still other recent research indicates that black men may be more inclined than their white peers towards traditionally female occupations therefore our models include controls for students raceethnicity finally prior research finds that students who score higher on standardized tests and earn higher grades in high school are more likely to enter maledominated fields such as engineering which are often viewed as more academically competitive furthermore students who earn poor grades at the beginning of college may be more likely to switch fields in an effort to find a major that might better suits their skills thus our analyses include controls for measures of academic performance in both high school and college in the logistic regression models that follow we test our hypotheses by first examining the baseline association between the gender composition of students major and their decision to switch majors in a second model we add controls for measures of raceethnicity social class and academic performance we conduct models separately for men and women to compare switching rates for those in genderatypical fields to their peers of the same gender who have chosen fields that are not atypical we also report the results of several supplementary analyses intended to further test the sensitivity of our results method data we used data from the 200409 beginning postsecondary students longitudinal study which is the most contemporaneous known dataset to include information on us students academic pathways in college designed by the national center of education statistics for the us department of education bps followed a nationallyrepresentative sample of firsttime postsecondary students in 20032004 respondents were interviewed at the end of their first year in college in 2004 with follow up surveys conducted in 2006 and 2009 our analytic sample included 3702 students who completed a degree at a fouryear not for profit degreegranting institution all analyses were weighted with the appropriate measures provided by bps to ensure national representativeness by accounting for the sampling design unequal probability of selection into the sample and unequal probability of attrition from the sample a few variables had small percentages of missing data which we subsequently imputed using multiple imputation gender composition of fields to measure gender composition of students chosen major we used the following designation for female students a gender atypical major is defined as one that is maledominated such that the composition is equal to or greater than 70 male likewise for male students a gender atypical major is one that is equal to or greater than 70 female our coding decision and rationale followed the lead of frome alfeld eccles and barber namely that a field that is 70 or greater of one gender is likely to be strongly identified with that gender in the public eye additionally within the college classroom a gender ratio of 710 is likely to stand out visibly because some recent research has included a looser categorization of 60 or greater of one gender whereas other research has used a more restrictive threshold of 80 or greater we ran models using these alternative categorizations and found that the results were very consistent with those presented here in exploratory analyses we also ran models using a linear version of percent female in the field but model fit indicators strongly preferred the categorical indicators included in the present paper to ensure that our categorizations of fields captured the current composition of their major as experienced by our bps students as well as the societal level in terms of the history of segregation within fields we utilized several different sources we began with the variable from the first wave of bps data that asked students to report their college major the survey included 46 possible categories that we collapsed into 28 categories due to either small cell size or to group students from very similar categories we aggregated students selfreported major to calculate the percentage of female and male students in each of 28 initial fields of study as a verification check we consulted data from the american freshman which also provides data on a nationally representative sample of college students in the united states collected at the same time as our bps sample the gender percentages for each major were highly comparable to bps and in all cases fell into the same gender composition category finally we wanted to ensure that there was not a discrepancy between our coding of majors using bps which captured the likely composition of the courses students take within their major and how the fields are plausibly perceived at a societal level due to the composition of previous generations of degree earners therefore we examined published reports using the nationally comprehensive integrated postsecondary education data system on the percent of baccalaureate degree earners in each field that were women beginning with 1986 and continuing through each year up to 2003 when our sample entered college consistent with prior research on the stalling of desegregation since the mid1980s we found that the gender composition of fields is quite stagnant throughout the lifetimes of the cohort in our study consequently we found that our categorization of maleand femaledominated fields would be the same if instead we used ipeds data femaledominated fields included english education psychology public administration and social service foreign language health sociology and other social sciences and family sciences maledominated fields included engineering computer science and economics whereas the first two majors clearly fall within the typical definition of stem fields and are commonly invoked in the literature on gender segregation economics also has a long history of male advantage shares a very strong emphasis on mathematical modeling with the other fields in the category and is included in the national science foundations definition of stem fields to ensure that our results did not differ if we only retained the more typical stem domains of engineering and computer science we ran additional analyses omitting economics from the maledominated category and we found that this did not change any of our analytic results we note here that whereas 14 of men chose a genderatypical field only 4 of women did control variables we included measures of students social and academic background to better ensure that the relationship we observe between the gender composition of the field and men and womens switching patterns is robust and not confounded by such factors parent education level was reported by the student and measured as the higher education of either parent among the following four categories high school diploma or less some college bachelors degree masters degree or above we also included measures of family income the average parent education level of our sample fell between some college and a college degree and the average family income was approximately 54000 raceethnicity is reported by students and measured as a series of dummy variables for black hispanic asian and other compared to the reference category of nonhispanic white these percentages are consistent with national patterns of college attendance reported elsewhere academic performance was measured by four variables from students high school years we included their official composite sat score that was collected by bps from the educational testing service as well as students selfreported cumulative grade point average which was coded by bps using the following scale 1 2 3 4 5 6 and 7 finally we constructed students gpa in their first two years of college based on information from their official university transcripts and utilized a typical four point scale where 0 f 1 d 2 c 3 b and 4 a on average students had a sat score of well over 1000 reported a cumulative high school average between a b and an a and had a college gpa a little above a 30 in their first two years we note that male compared to female students had a small advantage on sat score t 789 p 001 ηp2 001 whereas women had comparatively higher grades in high school t 484 p 001 ηp2 001 as well as in college t 848 p 001 ηp2 03 these gender patterns are also consistent with prior research switch versus stay our dependent variable was a dichotomous measure that distinguishes whether students switch to a different college major or whether they stay in their major through college and complete a degree in that major this variable was constructed by using information about students initial choice of major from the baseline survey and comparing it to the major students report completing their degree in from later followup surveys for our analytic sample on average across all fields of study 44 of students switched from their original majors although mens average rate of 42 was somewhat lower than womens χ 2 325 p 071 as we will discuss later we also conducted supplementary analyses using a dependent variable that included a third category to capture those students who left college without a degree results preliminary analyses table 1 displays the descriptive association between our key independent variable gender composition of initial field and our dependent measure capturing switching decisions beginning with men we note that that 63 of those who chose to enter genderatypical majors subsequently switched majors compared to only 39 of men who began college in majors that are not genderatypical χ 2 4484 p 0001 for women on the other hand their switching rates were lower in genderatypical than in other field types χ 2 061 p 44 the logistic regression that follows will further examine these descriptive patterns additional descriptive analyses shown in table 1 include percentages and means on our dependent variable for all of the control variables included in the subsequent multivariate analyses we found significant differences in overall switching patterns by raceethnicity for both genders among men compared to the reference category of nonhispanic white students black students had statistically significantly higher switching rates among women hispanic students had significantly higher switching rates than nonhispanic white students regarding family social class background among male students only switchers came from families with significantly lower levels of education and income among female students those who stayed and completed their initial major had statistically significantly higher mean sat scores than those who switched there was no difference between switchers and stayers in cumulative high school gpa for both genders among both genders those who switched from their initial major had significantly lower college grades than those who stayed finally correlations shown in table 2 show the association between our key independent variable of gender composition of major and all control variables these revealed that white female students were statistically significantly less likely to choose maledominated fields than women from other backgrounds male students with families that have more education and more income were significantly less likely to declare a femaledominated major however for women there was a positive and statistically significant correlation between parent education and entering a maledominated major male students with higher sat scores were significantly less likely to enter genderatypical fields whereas women with higher sat scores were actually more likely to enter a field dominated by the other gender thus descriptive analyses offer evidence that some aspects of students background and academic performance were associated with both the gendertyping of major they chose as well as their switching behavior our multivariate analyses will subsequently assess whether the association between gender composition of individuals chosen major and switching patterns remains net of all of these control factors hypothesis testing because our dependent variable is dichotomous we utilized logistic regression analyses an odds ratio higher than one would indicate that students were more likely to switch than to stay in the major we estimated the models separately for men and women we focused on comparisons between genderatypical fields versus other fields we calculated variance inflation factors and confirmed that multicollinearity was not a problem all models were calculated using robust standard errors that took into account the clustering of students within postsecondary institutions hypothesis 1 male studentsto test hypothesis 1 which predicted that men who enter femaledominated fields are more likely to switch fields than their peers in other majors we began with a baseline model that included only the gender composition of the field for predicting the decision to switch versus stay this procedure essentially replicated the descriptive results shown in table 1 yet tested for statistical significance utilizing standard errors that are calculated to account for the clustered nature of the data it expresses the results in terms of odds ratios we found that compared to their male peers in other fields men in femaledominated genderatypical fields were over two and a half times more likely to switch rather than stay in their major model 2 added all of the control variables to capture students social background and academic performance the odds ratio indicating mens greater likelihood of switching from a femaledominated major changed little and remained significant in this full model therefore our results clearly support our first hypothesis in addition black male students were more likely to switch majors compared to nonhispanic white youth and men with higher college grades were less likely to switch majors hypothesis 2 female studentstable 3 also displays results of analyses for female students to address our second hypothesis that women who enter maledominated majors are significantly more likely to switch fields than their female peers in other majors beginning with model 1 we see a different story than we observed for male students specifically the odds ratios comparing the likelihood that women in maledominated gender atypical fields switch versus stay in their initial major are close to 11 and nonsignificant this pattern did not change with the addition of measures of social background and academic performance therefore we do not find support for our second hypothesis because womens decision to switch was not related to whether their major is dominated by men additionally interaction effects between gender composition of the field and individuals gender in pooled models including both men and women confirmed that that the patterns were statistically different such that only mens switching decisions were significantly related to being in a genderatypical field supplementary findings we conducted several supplementary analyses to ensure that the associations observed between gender composition and switching decisions were not sensitive to alternative specifications of our analytic models first although it is typical for research examining decisions to switch majors in college to limit the sample to those who complete degrees we incorporated students who left college without a degree into our analytic sample and conducted multinomial logistic regression analyses where leavers were included as a third category of the dependent variable results were consistent with the more parsimonious models presented here compared to male students in other fields men in genderatypical majors were significantly more likely to switch fields compared to either alternative whereas there were no differences in these three postsecondary paths by gender composition of major for women because our hypotheses were not explicitly designed to predict decisions to leave college and because our substantive results regarding gendered decisions to switch majors were not changed we chose to present the more simplified comparisons of switch versus stay as shown in table 3 second we ran models where the variable for gender composition of field was further broken down to distinguish genderatypical fields from those that are genderbalanced and those that are dominated by the same gender results were consistent with our more streamlined dichotomous variable specifically male students in genderatypical fields were significantly more likely to switch fields than their male peers in both genderbalanced and maledominated fields whereas there were no statistically significant differences in switching patterns among women in each of the three field types we also note that altering the definition such that students were only defined as switching if they moved from one of these three field types to another also produced very similar results to those reported here with regard to the destinations of those who switched majors the average percent female of the new destination major of male students who left femaledominated majors was 57 which is the average percent female across all fields in the sample therefore a switch for male students from a genderatypical field represented a switch from being the exception to the rule to being well within the norm finally we conducted followup analyses to assess whether the association between gender composition of initial major and subsequent decisions to switch majors for male and female students varied according to students background because gender roles and cultural definitions of masculinity and femininity are not necessarily constant across either social class or racialethnic backgrounds we thus ran models exploring the interaction of the gender composition of the initial major with students race ethnicity parent education and family income none of these interactions was statistically significant and their inclusion did not improve model fit discussion building on prior theoretical and empirical research on gender segregation in education as well as in occupations our study examined the pathways of men and women who embark on a nontraditional path by pursuing a genderatypical major with the goal of empirically examining whether they are less likely to successfully attain a degree in their chosen fields than their peers who make more gendernormative choices by examining withingender differences in switching behaviors among both men and women who chose a genderatypical field in college our study contributes new evidence about whether nonnormative choices are likely to be changed during college specifically based on theories of gender devaluation we hypothesized that men in femaledominated majors would be more likely to switch fields than their male peers who chose fields that were not atypical additionally drawing on theories of chilly climate and stereotype threat we hypothesized that women who chose maledominated majors would be more likely to switch fields than their female peers in more normative fields our analyses of nationally representative data clearly offer support for our first hypothesis because we found that men were significantly more likely to switch from a femaledominated major yet we find no support for our second hypothesis because women in maledominated majors were no more likely to switch fields than their female peers in other majors importantly our results are robust to the inclusion of control variables for students social and academic background our empirical results about the lower relative persistence of men in femaledominated undergraduate majors compared to their male peers in other majors provide important new evidence suggesting that college is a critical place and time where young mens choices to pursue atypical fields of study and by extension their likely interest in entering atypical occupations after college are corrected or policed as mentioned before although our data do not allow us to test the actual mechanisms behind switching decisions this pattern is consistent with theories of gender devaluation specifically men who initially choose femaledominated majors have violated status expectations that privilege men by picking a field that is strongly identified with women such men therefore appear to be relinquishing their higher social status by pursuing a lowstatus and lowpaying field drawing on findings from research on occupational segregation it is likely that men who enter femaledominated majors must face negative social sanctions from their peers particularly other men and that adult mentors and family members may encourage them to switch to fields with more status and income by telling them that they can do better as male students move closer to the time when they will begin assuming adult responsibilities the normative pressures of adult masculinity likely act on their decisionmaking process prompting them to give more weight to the potential disadvantages of their initial selection and to prioritize the corresponding advantages of making a more gendertypical choice furthermore the anticipation of sanctions may be sufficient on its own to lead to anxiety and stress that prompts a switching decision but what about women as noted earlier the bulk of prior research on gender differences in switching majors concentrates on comparing women in stem fields to men in stem fields yet our study was specifically focused on a related but distinct issue not addressed in this prior literature namely whether women in maledominated fields are more likely than their female peers in more normative majors to leave their chosen field whereas theories of chilly climate and stereotype threat outline the deterrents that women in maledominated majors likely encounterfactors that their female peers in other fields do not have to face our empirical results reveal that these atypical women are nevertheless no more likely to change majors than their female peers in any other field of study what can explain this pattern for women perhaps because the jobs linked to maledominated majors have relatively higher labor market returns women in these majors have an additional incentive to stay even in the midst of the many obstacles discussed here social expectations regarding the desirability andor necessity of women to act as wageearners in support of their families have coincided with an increasing emphasis on extrinsic returns among recent cohorts of young women therefore it is becoming more socially acceptable for women to prioritize the kinds of advantages typically attached to maledominated fields without necessarily violating norms of femininity in fact their choice to pursue and persist within a major that is linked to occupations with more status and earnings may be met with respect and encouragement from those outside their field potentially providing a buffer against the obstacles they face within the field stepping back our results indicate that whereas mens choices to pursue gender atypical fields of study are corrected or thwarted in college womens are not from the perspective of increasing the presence of women in maledominated occupations such as engineering and computing this could be seen as a positive sign yet we note that a smaller percentage of women enter maledominated college majors than the reverse perhaps indicating that the processes that deter women from considering genderatypical fields occur more powerfully at earlier ages additionally the potentially good news that women have comparable persistence patterns in maledominated college majors as in other types of majors is further tempered by national evidence of womens high exit rates from many stemrelated occupations therefore it is clear that there remain many obstacles to disrupting gender segregation limitations and future research directions as with any study ours has limitations although our us sample is nationally representative the sample size of men and women in genderatypical majors is nevertheless small we also lack data that would allow us to more definitively understand why men and women make the choices they do for example we have no measure of certitude or how committed people are to their initially chosen field of study nor reports of the kinds of obstacles they face both within and outside their major neither does our dataset include measures of gender identity or endorsement of gender egalitarian views that could be helpful in predicting individuals who are more or less likely to stay the course future research could address such shortcomings either in the form of more extensive survey data from large samples purposively designed to examine the experiences of men and women in nontypical fields as well as qualitative studies focused on this topic additionally more indepth work is needed to examine the potentially unique cultures within specific educational or occupational fields or even across different college contexts to better understand how gender inequality is constructed and maintained practice implications our results suggest that the factors that could work to dismantle gender segregation of majors and likely segregation within occupations are likely different for men than for women we concur with scholars who argue that a shift in cultural definitions of masculinity will need to occur before men in femaledominated fields are accepted by those outside the field although this shift is likely slow in coming nevertheless identifying college as a critical point of deflection in mens pursuit of atypical fields provides scholars and activists with more information about where and how to most effectively intervene specifically it is possible that additional encouragement from those within the field of study might serve to buffer them from the deterrents outside the classroom perhaps the persistence of men in femaledominated majors would benefit from building alternative networks of support within college for women in maledominated majors however aiming efforts at increasing persistence in college majors does not appear to be a critical target rather focusing on understanding the psychological social and interactional processes that function early in the life course to deter females from ever considering or entering such fields and subsequently designing effective programs and interventions at earlier stages is likely to be most effective at promoting womens presence in nontraditional fields conclusion gender segregation in fields of study and related occupations severely constrains the life choices and chances of both women and men our study contributes to the prior literature on this important topic by highlighting that mens nonnormative choices may be obstructed or deterred for different reasons and at different times and places than the choices of women we must continue to investigate the experiences of both men and women who attempt to defy traditional gender scripts in doing so we will learn more about the maintenance of gender segregation and how best to disrupt it compliance with ethical standards this statement acknowledges that the authors have no potential conflicts of interest this research involves surveys collected from human participants which was collected by the us department of education the researchers have a restricted data license administered by the us department of education that allows them to analyze this data the researchers have irb approval from their institution to analyze this data note for gender composition of major the significance tests were chisquare comparisons of percentages within switching categories for racial ethnic group comparisons used the reference group of nonhispanic white students for the remaining control variables significance tests involved mean comparisons between switchers and stayers using ttests all comparisons were performed separately for men and women source of data beginning postsecondary students longitudinal study 0409 a genderatypical majors are defined as those for which their composition is equal to or greater than 70 of the other gender table 2 correlations among independent variables by gender appendix college major categorization and proportion female

drawing on prior theoretical and empirical research on gender segregation within educational fields as well as occupations we examine the pathways of college students who at least initially embark on a genderatypical path specifically we explore whether women who enter fields that are maledominated are more likely to switch fields than their female peers who have chosen other fields as well as whether men who enter femaledominated majors are more likely to subsequently switch fields than their male peers who have chosen a more normative field we utilize a sample of 3702 students from a nationally representative dataset on us undergraduates the beginning postsecondary students longitudinal study bps 200409 logistic regression models examine the likelihood that students switch majors controlling for students social and academic background results reveal different patterns for men and women men who enter a femaledominated major are significantly more likely to switch majors than their male peers in other majors by contrast women in maledominated fields are not more likely to switch fields compared to their female peers in other fields the results are robust to supplementary analyses that include alternative specifications of the independent and dependent variables the implications of our findings for the maintenance of gendered occupational segregation are discussed

introduction this article examines what space there can be for labour law and social rights in projects of regional integration a question i have previously examined in the context of the european union and now also increasingly in the context of the african union it explores how the normative mission at the centre of the labour law project seeking to use law to govern and ameliorate markets can be realised by thinking through different institutions which emerge from and are applicable to the global south as well as the global north and which dont presuppose formal labour relations or broad capacities of the state to do that the article is interested in three areas of contestation the first overarching question is how can we better conceptualise the relationship between economy society and law the objective here is not to compare regions the au with the eu as such rather the aim is to interrogate the utility which accounts of the interaction between markets and law of notions such as embeddedness and social regionalism which have been developed for and applied in the context of the global north can have in other contexts including that of the au second of the many differences between the two regional integration projects of the eu and au this article focuses on conceptualisations of development where their constituent member states are located on the path towards economic development and how one defines development third the article interrogates the related issue of the extent to which and the terms on which the constituent states are integrated into global trade the narratives within orthodox economics about how trade works and the role of law in this accordingly to return to the overarching theme of the article the insights which may have been pertinent to understanding the relationship between the economymarket on the one hand and the stateregion on the other developed in the context of industrialised economies of the global north and applied to the eu may have less purchase in the context of the au this leads to a turn to a more contextualised study of the economy and markets in doing so the article draws upon the methodological approach and insights offered by economic sociology of law the use of sociological approaches to investigate relationships between law and economy defined by sabine frerichs as an academic venture located in the middle of the social sciences economic sociology of law is not to be understood as an overspecialized approach which dissects legal economic and social aspects and focuses on the smallest possible subset only but as an integrative effort in reconnecting law economy and society both as spheres of reality and as fields of scholarly interest my interest is thus to map ways in which markets and trade liberalisation have been embedded within one example of regional economic integration in order to examine the wider significance of an economic sociology of law analysis at a different historical time with reference to the south rather than the north and against the backdrop of a changed global economic order more specifically i investigate the ameliorative potential of regional collective action by developing states which are industrialising as they integrate into world markets economic sociology of law and the eu integration project in attempting to understand the relationship between social rights and markets and the role for social rights in the operation of markets this article engages with and also seeks to go beyond polanyis concept of embeddedness much neoclassical or even new institutional thinking on regulation is for the most part premised on an opposition between market and regulation or market and state neoliberal ideology in particular is founded on a belief in the legitimacy of markets and t o establish this legitimacy neoliberals treat markets usually without explicit acknowledgement as existing outside society and outside history the market is simply there as granovetter shows even the new institutionalist version of neoclassical economics deflect s the analysis of institutions from sociological historical and legal argumentation and show s instead that they arise as the efficient solution to economic problems if one accepts the thesis that the market emerged naturally then state action is seen as an added extra as an exogenous interference in the workings of the market scholarship within the field of economic sociology has done much to illuminate the implications for thinking about law which follow from the recognition that markets do not exist in a state of nature drawing upon the work of polanyi the tradition of economic sociology challenges the idea that markets are a separate realm instead arguing that they are embedded in social relations from a sociolegal perspective rather than being natural phenomena markets are understood to be social constructs constituted by law and social norms polanyis primary intuition that economies are enmeshed or embedded within noneconomic institutions is a helpful one 1 they are thus not autonomous or selfregulating as classical economic theory suggests but located within a web of institutions politics social relations what polanyi refers to as the countermovement relates to a political regulatory response to the freeing of markets the forces of laissezfaire economic liberalism are offset by principles of social protection 2 what is noteworthy about the economic sociology approach is the assertion of the importance of state action and social relations not only in terms of the countermovement but also as constitutive of markets and essential for productive organization by this polanyi meant not only in the establishment of rules to enforce contract and protect property rights but further in the protection of society from market liberalism by anchoring markets within institutional regulation hence statements such as l aissezfaire was planned and e ven free trade and competition required intervention to be workable the notion of a selfregulating market is he emphasises utopian there are at least two meanings of embeddedness at play in polanyis thought 3 on the one hand the term is used to mean that all economies and economic behaviour are enmeshed in noneconomic institutions the constructedness of markets is a given in polanyi in contrast to their supposed naturalness on the other hand there is the idea that embeddedness alters from one economic system to another that whilst it is not possible to fully disembed the economy from the rest of society there are differences in the degree of enmeshment in my view these two conceptualisations are reconcilable the instinct that prompts one to reject the orthodox account of the rise of the selfregulating market as a utopian project surely makes it difficult to conceive of markets as being entirely disembedded i think the primary intuition about embeddedness is a helpful one whilst cognisant of the difficulties with this approach to the relationship between market and society these include primarily the criticism made by viviana zelizer and others of the polanyian distinction between the embedded and disembedded economy the argument that embeddedness does not go far enough in debunking standard economic models and the concern about the way in which the language of embeddedness conjures up an image of separate spheres or systems with markets as asocial and separate from society and with the two somehow communicating with each other rather than being coconstitutive in truth many neopolanyians refer to the idea of the always embedded market so the notion of embeddedness does not speak to the specific characteristics of modern capitalist economies or to the specificity of market organisation drawing together polanyis use of embeddedness with the insights of the varieties of capitalism literature block points to how different market societies are embedded within diverse matrices of ideas rules and institutional structures ruggie takes this embeddedness reasoning further to examine international regimes applying polanyis insights to the institutional reconstruction of the postwar international economy for ruggie the essence of the embedded liberal compromise is the formulation of a type of multilateralism one which is predicated on domestic intervention and which is compatible with the requirements of domestic stability the contention underpinning this article is that such polanyian embeddedness can occur at the regional as well as at the national level through a case study of the european union i show that the embedded liberal compromise of this regional integration project was predicated on the ability of these industrialised nations to embed the market within national institutions of social citizenship principally labour and social welfare law but this nationallevel social policy was ultimately shored up by social policy initiatives at eu level regional integration within the eu was premised on the existence of background rules at national level institutions of social citizenship to ameliorate the effects of economic liberalisation the drafters of the original european community treaties considered it essential to guarantee free movement of the factors of production goods persons services and capital to attain the perceived economic advantages of integration in general and the creation of a single market in particular namely enhanced efficiency in production made possible by increased specialisation in accordance with the principle of comparative advantage increased production levels due to better exploitation of economies of scale improved international bargaining positions made possible by larger size leading to better terms of trade enforced changes in efficiency brought about by intensified competition between firms in the creation of a common or internal market however national economies come under pressure to deregulate so as to remain competitive since national capacity to regulate markets is severely reduced due to removal of barriers to trade mobility of capital and fear of capital flight arguably states may feel pressured to reduce regulatory costs in order to keep or to attract capital and foreign direct investment nevertheless the orthodoxy was that there was no need for labour standards at the european level to balance trade liberalisation within the new economic community domestic welfare states would serve as social stabilisers to counter the effects of the strong liberalisation of the internal market and to maintain social cohesion domestically through mechanisms such as social transfers public infrastructure and labour law with regard to these background conditions lang refers to the shared commitment to the political ideology of embedded liberalism in the postwar era which shaped for instance the gatt regime and other institutions emerging from the bretton woods conference in contrast with todays laissezfaire liberalism the dominant philosophy forming the backdrop to postwar trade liberalisation and to regional integration between industrialised nations was a recognition that governments should intervene to protect their populations from economic instability and insecurity and promote their own versions of a welfare state the institutional reconstruction of the postwar international economy accepted that liberalism or trade liberalisation had to be embedded in society after its initial hands off approach towards social policy the eu in time evolved a supranational social dimension both to protect vulnerable regions sectors and workers from the effects of intraeu trade liberalisation and to offer protection against global trade as examples we have social security and residence rights for community workers and eu citizens but further the eu also developed major redistributive policies adjustment assistance and financial instruments to address economic and social imbalances at eu level in the form of the european structural and investment funds 4 what one might call an example of social regionalism the embedded liberal compromise in the eu context principally involved embedding the european internal market within national social policy presupposing the existence and the capacity of the national systems of labour law and social welfare law mentioned earlier the eu sought to shore up working and living standards in the face of economic liberalisation but did so principally by supporting the member states in so doing indeed the social harmonisation which has emerged at eu level has never been intended as a replacement for the more substantial social provision assumed to exist at national level the bulk of the burden of financing the social transfers ameliorating trade liberalisation falls on the states of course as far as the eu is concerned this social dimension has to a great extent been unravelling in recent years even prior to the current sovereign debt crisis 5 but the central points i wish to raise here are first that the eu has illustrated how regional integration can complement the efforts by states to protect society from global market forces it has shown the possibility of regionalisation with a strong social dimension second industrialised economies of the global north including those in europe undertook an opening to regional and then global markets in an era favourable towards embedded liberalism this applies both to the evolution in the protective capacities of individual states of the north during the twentieth century and later the evolution in the protective capacities of the region it differed from the current era of what might be called resurgent neoliberalism or what gill refers to as disciplinary neoliberalism characterised as it is by market fundamentalism and third to be explored in more detail below the ability of these industrialised states to embed the market through social transfers and welfare state regimes and the subsequent embedding of the european internal market within national systems was made possible in large part because of transfers from periphery to core from the global south to the global north by means of uneven patterns of trade paths to development the role of law and the rule of law this section turns the lens of economic sociology of law and its integrative effort to reconnect law economy and society away from its more familiar focus on the industrialised states of the global north and on to a study of developing states the questions here relate to hettne suggests that d evelopment is one of the oldest and most powerful of all western ideas highlighting the hegemonic force of a narrative centred around growth and progress and premised on models emerging from these countries own experiences and prejudices this view is at the root of modernisation theory a paradigm which adopts an evolutionary perspective predicting the movement of countries from a state of underdevelopment by means of an imitative process in which the lessdeveloped countries gradually assumed the qualities of the industrialized nations today the development strategies of international development institutions such as the world bank have coalesced around the rule of law as the key to transforming developing countries into market economies although as santos notes several competing conceptions of the rule of law might be in play at any one time in her account of the troubled evolution of law and development or legal development scholarship and practice perrykessaris notes what has been identified as the beginnings of a third moment in law and development among both academics and practitioners this new approach is characterised by the new attention to the limits of markets the effort to define development as freedom not just growth the stress on the local the interest in participation and the focus on poverty reduction however this new mainstream or third moment within law and development practice does not offer a complete break with earlier periods of orthodoxy in particular those approaches which placed the rule of law centre stage in the understanding of the development process what is notable about this more recent stage in mainstream law and development practice is that it remains marked by a market fundamentalism although offering what kennedy refers to as a chastened neoliberalism in contrast critical law and development scholars interrogate and challenge the assumptions which have led new and old mainstream theorists and practitioners especially the international development institutions and other transnational actors to be so dedicated to the notion that particular legal forms and institutional frameworks are necessary for economic growth and development as will be seen identifying the correct forms and institutions required to realise economic development is also an apt focus for the economic sociology of law approach the relationship between law institutions and development is one which preoccupied weber and indeed a version of weberian thinking is central to mainstream law and development thinking as is a hayekian conception of the rule of law webers observations on the central role of rational legal systems in the emergence of modern capitalism and on economic development more generally have been implicitly and explicitly coopted by the world bank and other international financial institutions according to weber one of the most important preconditions for the development of a market economy was the rationalization and systematization of the law in general namely the predictability and security gained from a formal legal process in an interpretation which located weberian thought at the centre of development theory policy and praxis in 20th century usa but has been criticised for simplifying weber parsons outlined a modernisation theory which posited that there is a universal path towards economic development which features the emergence of a highly differentiated social structure this path features the centrality of free market entrepreneurs and states that wish to succeed in economic development should do as much as possible to free constraints on entrepreneurs and investors 7 parsons interpretation of weber has arguably misapplied webers typology in order to develop a universalistic account of economic growth and placed weber in the service of a particularly american version of capitalism however the orthodoxy which took hold has been influential within the international financial institutions feeding into the washington consensus namely the view that all countries should adapt their institutions to a global template based on constitutional guarantees for private property a minimalist state and the liberalization of trade and capital flows both the modernisation theory and the washington consensus accord significant priority to private law rights as can be seen in the focus on the formalisation of property rights but what of regulatory law of the sort which labour lawyers typically advocate trubek and santos characterise neoliberal law and development thought as focused primarily on the law of the market with regulation often presented as an unnecessary intrusion on the market and relatively little concern … shown for law as a guarantor of political and civil rights or as protector of the weak and disadvantaged positing the rule of law as a development strategy arguably adopts a reductive view of law as kennedy notes such rule of law advocates tend to go beyond seeing the need for minimum national institutional functionality but rather see the rule of law as a formula to be applied wholesale in a way which makes simplifying assumptions about the form and content of law prioritising formalisation of law and the elimination of corruption granovetter argues that orthodox neoclassical economic accounts provide an undersocialized account of economic action whilst sociology offers an oversocialized conception whilst economic sociology can avoid these two extremes by applying a sociological lens to economic phenomena the emerging discipline of economic sociology of law can go further by bridging the intellectual disconnectedness between the legal economic and social which is a hallmark of much orthodox thinking from the international development institutions as an example of work in the tradition of economic sociology of law perrykessaris study of the relationship between national legal systems and foreign direct investment has shown the world banks reliance on the economic approach to be responsible for its overestimation and misunderstanding of the role of law as a determinant of foreign investment in sri lanka and the inaccuracy in its measures of investors perceptions and expectations of legal systems the state markets and paths to industrialisation i want to continue this analysis of development by turning now to the terms on which african states are integrated into global trade there are at least two facets of the critique of modernisation theory which are linked relating to the free trade economistic underpinning of the theory and to the colonial ideology inherent in the modernisation approach in its economic analysis modernisation theory emphasised institutional order and assumed that underdeveloped countries would follow a similar path to that of developed capitalist ones 8 in contrast to these orthodox economic approaches more heterodox economic thinking in the form of structuralist and import substitution industrialisation models of development contend that the uneven terms of trade between the global north and the global south have hindered the development of the latter indeed the prebischsinger hypothesis goes so far as to suggest that the economic productive and labour market structures of the developed centre and of the less developed periphery countries differ so greatly that free trade can actually be harmful to the latter emerging from yet offering a critique of structuralism in particular the structuralism of the united nations economic commission on latin america under prebisch dependency theory built on the notion of uneven terms of trade between the centre and the periphery but did so more overtly in terms of a critique of imperialism whilst there may be no such thing as a single unified body of thought called dependency theory nevertheless a core concern of this approach is that if some countries today are underdeveloped it is arguably due to the operation of predatory capitalism in its colonial and postcolonial forms as bernstein puts it the countries of the third world were actively underdeveloped in the process of the emergence and consolidation of capitalism as a world system the original centres of capitalism established their wealth and their power through incorporating and exploiting other parts of the world the primary accumulation of capital in the metropoles or centre was fed through a drain of wealth from the satellite or peripheral countries typically involving their colonization a surplus drain which continues to the present day even if its forms may have changed and direct colonial rule is no longer a necessary condition of this process 9 historically african economies have been deeply integrated into the global economy but the terms of that integration have been highly unfavourable to say the least neomarxist and related world systems theory adapt dependency approaches to further challenge the assumptions of modernisation in particular they question the view that the less developed countries could follow the same path to development as the highly rethinking the statemarket dichotomy through the developmental state in what institutional structures can the postcolonial economy be embedded i want to explore two possible answers at the level of the individual state and at the level of the region one example of societal selfprotection akin to welfare states in the industrialised north is the evolution of the postcolonial developmental state based on stateled industrialisation behind protectionist barriers the concept of the developmental state contains something of a contradiction in that the very notion of the developmental state presupposes one path or route to economic growth and development whilst the literature is highly diverse in identifying a multiplicity of conditions or prerequisites for the emergence of the developmental state 10 this tension may in part be explained by the fact that scholarly observers of developmental states tend not to advocate monocausal explanations and indeed much of the focus is on the interaction between conditions for instance fine and others characterise the literature on state and development as falling into two schools or approaches the economic school takes market failure as its starting point to justify state intervention in order to ensure for instance requisite economies of scale or coordination of investment within and across sectors to support economic growth this approach typically leaves unanswered the question of the political capacity of the state to identify and implement policies which can correct for market failure thus the political school seeks to fill that gap through a focus on the nature of the state itself and whether it has the potential and the independence to adopt the necessary developmental policies remarkably aloof from consideration of the economy itself and the nature of the policies required to bring about development what both schools have in common though and what the paradigm of the developmental state model offers most distinctively is departure from both modernisation theory and dependency theory and latterly a departure from neoliberalism this is evidenced in the regions with which the developmental state paradigm is most closely associated with east asian countries which enjoyed latecomer catchup industrialisation for example chalmers johnsons key initial study of japan focused on its ministry of international trade and industry and the rigid control over the private sector by bureaucratic government elites similarly taiwan and south korea are held up as examples of governing the market that is of substantial state intervention into or against the market what was also central to early instantiations of the developmental state paradigm was the contrast drawn between state and market an arguably false dichotomy certainly though there was a rejection of the market fundamentalism of international financial institutions such as the world bank and the international monetary fund as routley puts it this emphasis on the significant role of the state in successfully achieving economic growth conflicts with the neoliberal market focused assumptions about how to promote development that many development actors had been working with rather than seeing the state as the agent which could act to produce growth these neoliberal approaches saw the state as part of the problem and pushed to reduce its size and influence in order for development to take off in other words the developmental state paradigm is a challenge to and challenged by neoliberal developmentalism the pressure to liberalise and open up national markets arguably limits the development space available to states constraining the scope to adopt the sort of protectionist and nationalistic approach adopted by developmental states in the past but the developmental state idea or paradigm should not just be used as a proxy for state intervention musamba reviews the defining features of the developmental state concept with reference to the experiences of east asian countries she seeks to challenge the view that the developmental state approach is not viable in africa critiquing the impossibility theorem which is sceptical as to whether the east asian development experiences can serve as a model for africa this impossibility theorem has been adopted in particular by the international financial institutions especially the world bank but as mkandawire and others have suggested this approach is characterized more by an ideological preference of the market approach to development rather than a careful analysis of the role of the state in development the debate about the applicability of the east asian model in other contexts in particular in africa is in part located as chang argues in the neoliberal distinction between markets which are seen as natural endowments which can be transplanted from one region to another and institutions which are seen as manmade and thus not transplantable contend with the social dislocations caused by european trade policies and intrusions into their sovereign status resulting from the institutional design of the global trade regime as noted postcolonial states never enjoyed protective capacities equal to those of the core these disparities were exacerbated by neoliberal policies of structural adjustment from the 1970s onwards but long before such interventions global economic inequalities were entrenched through the continuation of colonial preferences even after the formal end of empire as discussed above through the persistence of a pattern of exchange between the core and the periphery as polanyi noted but if the organized states of europe could protect themselves against the backwash of international free trade the politically unorganized colonial peoples could not the revolt against imperialism was mainly an attempt on the part of colonial peoples to achieve the political status necessary to shelter themselves from the social dislocations caused by european trade policies the protection that the europeans could easily secure for themselves through the sovereign status of their communities was out of reach of the colonized as long as they lacked the prerequisite political government for example the eus economic model potentially destabilises the development of regional integration in its developing country trading partners it also potentially destabilises redistributive social institutions or regionspecific adjustment mechanisms within industrialising states with which it trades for instance the mechanism for regional redistribution of customs duties between the five members of the southern african customs union has been severely undermined in general by the lowering of external trade tariffs in the context of global trade liberalisation and in particular by a reciprocal trade agreement negotiated between south africa and the eu this eusouth africa trade development and cooperation agreement 12 has arguably led to a reduction in revenues for all sacu states as the eu accounts for 40 of sacu imports certainly the common tariff revenue pool has been reduced with swaziland and lesotho losing out in particular as 50 percent of their fiscal revenues come from this tariff revenue pool more generally the likely adjustment costs for african states of the move to full reciprocity in international trade will be severe eu trade with the group of 77 african caribbean and pacific states has been marked by the core principle of nonreciprocal trade preferences first enshrined in the lomé convention of 1975 which has meant the acp countries were under no obligation to offer reciprocal market access to the eu except for treatment no less favourable than that offered to other nondeveloping countries however such preferential treatment of products from acp states is steadily disappearing as these bilateral trade agreements are progressively made wtocompatible the reliance on tariff revenues coupled with the prominence of eu imports into the african continent means that the required tariff dismantlement will lead to acute shortfalls in revenue but there are internal constraints too the relative success of the social regionalism which has occurred within the eu is because the constituent member states of the eu had domestic social and welfare systems a social state which were able to fund social policy interventions but in addition supranational decisionmaking was undoubtedly an important prerequisite for the development of the european social model in contrast the reluctance of developing andor newly postcolonial states to constrain their sovereignty through supranational decisionmaking may limit regional integration and the development of the social dimension of that integration having acquired political autonomy and statehood relatively recently and facing constraints on policy action from outside their borders individual states are unwilling to cede normmaking power to a central or supranational body integration arrangements within regional economic communities across africa are thus normatively loose tending towards what one might call decisional intergovernmentalism 13 but perhaps a better view of the looseness of these institutional arrangements is that they are designed to be flexible regimes of cooperation precisely in order to better suit the multiple policy objectives of the african context and to allow for greater state sovereignty second the multiplicity of regional economic communities and their overlapping mandates objectives protocols and functions further inhibit the development of spheres of policy influence at the regional level that are able to direct or influence national policy the multiple overlapping memberships complicate regional governance one outcome of which is weak regional support for emergent national institutions of social citizenship in part due to the lack of institutional arrangements to attract either international or intraregional transfers the institutional design of regional economic integration within africa namely which models of governance the au and its member states are adopting thus limits the possibilities for regionalisation and the social dimension of that integration it arguably remains unclear which model of integration and continental governance the au and its member states are adopting or rather the models which are being pursued are pulling in competing directions laporte and mackie contend that it remains an open question whether african leaders will ultimately make a clear choice for a supranational or an intergovernmental type of institution however a better view is that it is inappropriate to allow eustyle institutionalism to shape perceptions about how regionalism should look indeed the constitutive act of the african union which came into force in 2001 and brought the au into being by replacing the charter of the organization of african unity should be read as a compromise between advocates of a federal union with supranational decisionmaking and those unwilling to concede national sovereignty the persistence of fragile states and weak resource bases generates ambivalence towards deep forms of regional integration and the pooling of sovereignty söderbaum puts it more bluntly that weak states tend to place heavy emphasis on formal and absolute sovereignty for gathii the spaghetti bowl of overlapping regional economic communities is no bad thing if it reflects as he would argue a desire on the part of these nation states to retain national sovereignty rather than be enveloped within an inexorable move towards closer tighter more supranational forms of integration his argument is that it suits postcolonial subsaharan african states to enter into these looser regional arrangements and not to aspire to the form of economic integration with binding centrallydetermined norms that have characterised european regional integration but allied to this model of integration is the approach to markets being adopted within the au and its regional economic communities a market orientation which following the neoliberal turn as the dominant mode my conclusions in particular in light of interviews with au commission officials are that this emphasis on intergovernmentalism together with the existence of a multiplicity of regional economic communities with overlapping memberships determines the structure of regional governance and arguably undermines potential for emergent trade adjustment mechanisms the second observation relates to the marketoriented approach of the au and the recs there is an observable shift away from earlier forms of integration based on protectionism towards the neoliberal trade liberalisation paradigm whereas it could be argued the aims of the original wave of regional integration projects of the 1960s and 1970s had at their core the evolution of the postcolonial developmental state concerned with reducing northsouth dependence the wave of regionalism since the 1990s has in contrast been more focused on the objective of integrating these developing economies more closely into global markets even though the terms of such integration remain uneven there has been a shift within the continent of africa away from an earlier form of integration based on protectionism towards the neoliberal trade liberalisation paradigm accordingly olivet and brennan refer to the task of reclaiming regional integration from the neoliberal trend conclusions this article has sought to examine crossnational market integration projects namely the european union and the african union by applying insights of economic sociology of law to industrialised and developing economies and regions it contends that there is real value in the approach offered by economic sociology of law that is the use of sociological approaches to investigate relationships between law and economy the approach allowed us to interrogate understandings of the interaction between law economy and society which inform the economic development process as witnessed for instance in the experimentation with the developmental state and neoliberal developmentalist paradigms the economic sociology of law approach also illuminates the role of state action including in the context of regional integration and the differential capacities of the state the north and the south to steer govern or embed the market writing in a paper entitled universal capitalism or regional planning polanyi cautioned that regionalism is not a panacea whilst regional cooperation has the potential to contribute to a more equitable pattern of globalisation nonetheless the question remains in what form of regionalism will the postcolonial state be located and in what institutional structures are these nascent forms of market integration to be embedded challenges posed to the sustainability of european welfare states have led to a retrenchment of these social protective elements and an unravelling of that embedded liberal bargain in industrialising states in contrast it is necessary to explore political and economic constraints on regional integration which frustrate what could well be a genuine countermovement to ameliorate the fundamentalism of the market undoubtedly the active role of the developmental state in stimulating and directing economic growth has been challenged by the neoliberal turn in the international economic order and the dominance of the washington consensus it is clear that a societal response at the regional level may well be muted if priority is given to market governance in order to secure entry into the global trade regime how then in the newer waves of regional economic integration in the global south can the shift away from the explicitly protectionist developmental nation state nevertheless create space for a regulatory rejoinder to free markets industrialised ones by reconceiving the primary unit of analysis as the capitalist world economy seeing the world as divided into core semiperiphery and periphery accordingly catchup by less developed countries is impossible given that relations within the world capitalist system are marked by an unequal exchange involving the transfer of surplus value from the periphery to countries in the core through the extension of the capitalist market at the expense of precapitalist systems thus these heterodox theories of development suggest that the exploitation of many third worldglobal south countries by colonial and neocolonial core countries continued if not intensified following their achievement of political independence the theory of economic surplus developed by baran is particularly significant for the light it potentially casts on the contemporary economic order of trade liberalisation and free trade baran argued that the effects of western european capitalist penetration of the outside world resulted in latin america africa and asia in outright plunder or in plunder thinly veiled as trade seizing and removing tremendous wealth from the places of their penetrations such intercontinental resource flows fed the industrial revolution in europe whilst leaving the donor countries systematically underdeveloped thus according to baran the reason for the poverty of less developed countries was not lack of capital or expertise or excess population as economic orthodoxy would have it rather the source of their poverty was to be found in the extraction by the core of this surplus defined as the mass of resources which a society could have at its disposal to be reinvested in productive ways to facilitate growth such drain on colonial and postcolonial countries is arguably exacerbated by the formation of rules of the game of the global economic order as thomas puts it the legal rules of the international economic order though informed by liberal ideals of egalitarianism perpetuate northern economic hegemony by failing to address the entrenched economic inequality of the south resulting from the colonial era the unequal exchange is marked by the transfer of surplus value from the periphery to the core and also by the extension of the capitalist market at the expense of precapitalist systems arguably therefore the embedded liberalism which underpinned the redistributive capacities of individual states of the north and the redistributive capacities of the eu integration project was predicated on the transfer of value from the global south the pattern of exchange between the core and the periphery the extraction of raw commodities from the south and the commodification of the labour power of colonial states made possible the redistributive welfare state of the global north the scope for social regionalism within subsaharan africa i want to turn now to this question of the ability of institutions to protect from the market in the context of regions and regionalism developing states lack the policy space institutional or economic capacity to moderate the harmful domestic effects of market exposure in addition their economies are characterised by high levels of informalisation in labour and other markets it is highly problematic to expect individual states within for example subsaharan africa to be the only or main source of their own adjustment my question then becomes if not the state what of the region if there is no social state within which to embed liberalism what is the potential of regional integration as a response to globalisation as witnessed in the case of the eu regional integration with its removal of barriers to trade between states can be a cause of or an exacerbating factor in undermining the autonomy of the state to operate systems of social protection but equally regional integration offers a potential solution or potential counterweight to open markets the point i want to make about the value of the region is that in the past and in the case of the eu it was able to serve as a complement and even a bolster to the social state the regulatory response to markets which polanyi predicts occurs at the regional or supranational level rather than solely at the national level to what extent can the work done by the concept of embeddedness and the experience of social regionalism in the global north have resonance in the global south given that the two conditions outlined above do not apply first the terms of global trade are less sympathetic towards government intervention second the individual states are less able to provide social stabilisers examination of a number of features of the design of continentwide regional integrationthe african union and subregional integration through the eight regional economic communities which are recognised by the african union reveals a series of key external and internal constraints 11 as will be explored below internal constraints relate to the institutional design of regional integration in africa and the different models of integration and regionalism the au and its member states might be said to be adopting externally attempts at regional economic integration are undermined in general by the broad context of the global trading regime unequal exchange and also by crosscutting bilateral trade agreements unfettered intraregion trade poses myriad challenges as does the broader liberalisation of global trade the developing countries of the african continent have in addition also had to notes 1 as i have explored elsewhere the concept of embeddedness is not very well defined within polanyis major work the great transformation and as krippner et al point out there are clear tensions between polanyis initial use of the concept and its use today see also dale 2011 2 as examples of which he includes trade union and antitrust legislation as well as legislation relating to public health factory conditions workmens compensation municipal trading social insurance public utilities and trade associations the following draws on ashiagbor 2013 a third conceptualisation of embeddedness is that offered by granovetter who argues that orthodox neoclassical economic accounts provide an undersocialized account of economic action whilst sociology offers an oversocialized conception whereas in fact he posits most economic behaviour is closely embedded in networks of interpersonal relations however this interpretation of embeddedness focussing on network structures has been criticised for leaving intact the notion of an analytically autonomous economy criticized forcefully by polanyi krippner and alvarez 2007 granovetter himself later observed i use the term embeddedness in the 1985 article in a narrower and somewhat different way than polanyi meant it krippner granovetter et al 2004 113 4 there are five european structural and investment funds the european regional development fund the european social fund the cohesion fund the european agricultural fund for rural development the european maritime and fisheries fund structural funds are allocated to regions of the eu depending on gdp per capita regions with less than 75 of the eu average are designated as less developed and receive 52 of total spending the less developed regions are concentrated in eastern europe particularly those former communist countries that have joined the eu since 2004 though parts of greece portugal the south of italy and spain are also included they also include west wales and the welsh valleys cornwall and the isles of scilly the uk is therefore unusual among northern european countries in having any less developed regions see browne et al 5 or rather the economic constitution which was always the core of the eu project is now serving to undermine the capacity of member states to maintain certain social models especially corporatist forms at national level see ashiagbor 6 in mapping the history of development thinking hettne argues that development entails development theories development strategies and development ideologies all of which are highly contested 7 thomas 2006 423 8 early law and development scholarship or rather the dominant liberal legalist paradigm critiqued by trubek and galanter can be seen as the legal counterpart of modernisation theory in that law and development scholars relied heavily if not exclusively upon modernization theory for their presuppositions and theoretical frameworks 20 9 see also frank 1966 contemporary underdevelopment can be understood not as a product of that countrys own economic political social cultural characteristics but in large part the historical product of past and continuing economic and other relations between the satellite underdeveloped and the now developed metropolitan countries 10 of course the diversity of these accounts is indicative of the lack of consensus in the literature on the key aspects of the routes that states have taken to become developmental but it may equally reflect the variety of routes states have taken

this article explores regional integration projects in the global south and constraints upon them its focus is on the use of economic sociology of law as a methodological approach through which to rethink the relationship between law markets and state and to explore how these interact in the context of one regionalisation project the european union as well as interrogating whether economic sociology can similarly cast light on another regionalisation project the african union the article examines the role of the social state and of labour market institutions as part of an array of adjustment mechanisms responding to the liberalisation of trade and the opening of national borders to what extent can social law and social rights mediate the operation of markets and what does this mean when viewed from the perspective of developing as well as industrialised countries

introduction in contemporary society the division of social classes based on financial capacity generates inequality among different sectors of the population we find groups of people whose financial situation allows them to meet their needs while other groups capacity to do so is either very limited or practically nil this wealthpoverty dichotomy is manifested both in comparisons among states and among people within the same city therefore to alleviate differences in financial capacity in regard to meeting needs social assistance or action programs exist at different geographical levels to the traditional division of the first second and third worlds the idea of the fourth world has been added which refers to those within the first world who lack financial capacity in seville spain a firstworld city these situations of need that the state fails to cover through its public administration are addressed through the intervention of private agents whose main activity or a part of it is social action these agents include nongovernmental organizations and religious organizations however because spain is a country with deep roots in the christian tradition it also has other types of social agents religious fraternities brotherhoods and associations of the faithful the fact that the researchers are from the city of seville allows us to better understand these corporations and their profile as social agents dedicated to social action compared to other agents of social intervention such as ngos or foundations while religious fraternities and brotherhoods are linked to the catholic church they have a different origin than religious congregations religious fraternities and brotherhoods arise as associations of lay people centered on devotion to a titular image around which they organize cults for specific purposes however they are always linked to a social action and are usually related to a group linked to the corporation due to their origins in medieval guilds according to the majority of authors such as moreno the common purposes shared by all such organizations are to promote the celebration of cults in honor of those for whom they are named to bring about spiritual improvement among members and to provide charitable care for one another and for the needy in general along the same lines according to other authors such as valduérteles according to ecclesiastical regulations their characteristic purposes are the promotion of public worship training of brothers improvement of society in a christian spirit promotion of charity among the brothers thus emphasizing the aspect of the opening the organization to society both authors point to charity as the ultimate goal of religious fraternities and brotherhoods an aspect on which we will focus in this work starting from the notion that social action in a city like seville represents a social change project involving several actors such as the state public administration and other social agents we raise the possibility that greenleaf idea of servant leadership applies to these lay organizations fulfillment of their purpose of exercising social action for the needy in general in turn and assuming that this is indeed true we are interested in determining the specific characteristics of the teams that lead these organizations to do this in addition to conducting the survey and processing the resulting data we analyze the following the concept evolution and configuration of fraternities and brotherhoods the translation of the concept of the leaderserver to fraternities and brotherhoods as legal persons the application of the concept of leaderserver to fraternities and brotherhoods the characteristics of the profile of fraternities and brotherhoods and the new horizons explored through this research previous notions in this research we address the world of religious fraternities and brotherhoods a subject that is of great interest at regional and local levels as it is a manifestation of the practically autochthonous popular religiosity of spain and its former colonies particularly in andalusia this world called the cofrade leads us into a social reality that possesses its own vocabulary and idiosyncrasies formed over centuries of history therefore we find it pertinent before going further into the subject to discuss a series of previous notions that allow us to clarify some questions that may arise the first issue to address is that of language it is necessary to define and distinguish among concepts and to clarify those terms that cannot be translated or whose translation can lead to error we begin with the terms hermandades and cofradías words that could both be translated interchangeably as brotherhoods however in spanish the terms are not the same in this work we prefer to use the term religious fraternity for hermandad which etymologically approaches but is different from the concept of a college fraternity or fraternity highlighting the aspect of religiosity in addition we prefer to use the term brotherhood for cofradía in any case hermandad can be used in a broad sense to also refer to brotherhoods and hence in this article we will consider the same use of the concept of religious fraternity another construct that we must bear in mind is that of the asociaciones de fieles which can be translated as associations of the faithful and which constitute a modality within these types of corporations that has an equivalent structure and purpose but occupies a different legal and ecclesiastical category from that of religious fraternities and brotherhoods these corporations should not be confused with religious congregations which are founded by secular people and are usually constituted either only by secular people or by secular people and lay people within the internal structure of these corporations we find the figure of hermanoa mayor which can be translated as big brothersister however we will not use that concept instead we shall use alcalde or mayor for we believe that this more political term more succinct since the legal representative of the corporation is democratically elected by the adults in the corporation we prefer the concept of mayor because one of the corporations includes that position and its powers are identical to those of the hermano mayor whose position is held by whomever serves as archbishop of seville the term president would also be valid however the term is rarely used in these cases the members of the corporation are called hermano and hermana or brother and sister in english however in spanish the plural forms can be hermanos hermanas or hermanos this is due to a linguistic norm called the generic masculine whereby the masculine plural of a word can be used to refer to both genders the problem is that the term hermanos based on the norm of the generic masculine creates confusion when translated as the neutral english term siblings since we are not talking about a family relationship in legal terms but rather in spiritual terms therefore it would not be entirely correct to use siblings hence we refer to those who belong to the organization as members or by applying the spanish concept of the generic masculine as brothers other concepts that cannot be translated are priostía rocieras cristíferas or simpecado within this particular vocabulary we must also take into account the titular image titular of the brotherhood or simply titular which are the figures that exercise a spiritual patronage over the corporation these may be the blessed sacrament cristíferas avocations marian avocations saints beati or blessed souls these titulars are worshiped through the consecrated form in the case of the blessed sacrament or through paintings simpecados and especially sculptures the latter are of particular historicalartistic importance in andalusia and specifically in seville where in addition to being worshiped in church they are also carried through the streets in processionals most corporations are governed under the general council of religious fraternities and brotherhoods of seville or the council which is under the archdiocese this institution manages relations among all of the religious fraternities and brotherhoods the archdiocese and the public administration its functions include facilitating street processionals promoting the resolution of conflicts between corporations and distributing the financing they receive from the public administration in addition this institution also carries out its own social action projects and others in conjunction with the religious fraternities and brotherhoods actually in 2002actually in 2004 the council promoted the carrying out of an investigation into social action the result of which was reflected in the white paper on social action laaccionsocialconjuntalibroblancodelaaccionsocial however not all corporations of this type such as the associations of the faithful are subject to the authority of the council we must clarify that we can identify these corporations based on different criteria and categories we have opted for the most used method of categorization which is based on when the corporation ordinarily carries out its main procession therefore we distinguish the following categories religious fraternities of penance hold processions of penance at the santa iglesia cathedral between palm sunday and easter sunday religious fraternities of vespers hold processions of penance at their location between the friday of sorrows and saturday of passion week religious fraternities of glory hold processions at a different time than those of the religious fraternities of vespers and penance association of the faithful holds processions at a different time than those of the religious fraternities of vespers and penance and rociera religious fraternities make a pilgrimage to the sanctuary of the virgen del rocío in almonte huelva spain the scientific literature on this cofrade world is limited as the existing literature has traditionally focused on historical theological legal and artistic aspects treatments in other fields such as psychology have been less abundant in any case on this topic we must observe the considerations on the subject of religious fraternities and brotherhoods of díaz and his compilation of publications related to the fields of history and law in addition although a considerable amount of material exists it is mostly informative since thus far not much scientific interest has been generated beyond the local or regional level to understand the history of these corporations it is easiest to turn to informative works for a more indepth exploration of their origins in the absence of scientific publications that can cover all of those in existence we refer to informative works particularly the history sections of the websites of each corporation or failing that to the summaries on the website of the general council of religious fraternities and brotherhoods of seville nonetheless scientific publications do exist and can provide information regarding specific issues such as when there were still bloodshedding flagellants or brothers which along with other practices were heavily regulated since 1604 and banned since 1777 in our case because social action is the topic being addressed there is even less reference literature since this is often created for people from outside of the cofrade world who are unfamiliar with it however there happens to be a researcher who specializes in this area valduérteles who is a doctor university professor and researcher in the field of business is currently mayor of one of these corporations and has been publishing about religious fraternities and brotherhoods and their social actions for several years valduérteles is probably the person in seville who has done the most work in this area with papers such as hermandades para el siglo xxi and informe sobre la caridad en las hermandades de sevilla in recent years he has published works on brotherhoods outside of the legal historical or artistic fields such as hermandades 360 • published by the cajasol foundation among other works these publications enjoy wide recognition and have served to raise awareness about the social action of these corporations and how it has developed over time as we can see in the following article also thanks to the white paper on social action contributed to the work of roda iv simposio sobre hermandades de sevilla y su provincia which present the issue of social action highlight the chapter of la acción social en las hermandades una perspectiva desde la historia y la actualidad by de julios for this study local news articles or specialized articles on the cofrade world were of great importance because they offset the lack of information from scientific and current literature which from a local point of view we can directly observe but would be almost impossible to transmit in full this is also true of specific topics mentioned in the article such as the following the current role of women in religious fraternities and brotherhoods for more on this issue we recommend the following article likewise specialized websites regarding religious fraternities and brotherhoods have also been important most of these are local in scope and provide some information that can be extracted regarding social action in particular to learn about some of these projects one must visit the websites of the corporations themselves including the general council of religious fraternities and brotherhoods of the city of seville some examples can also be found on the website of the provincial delegation for religious fraternities and brotherhoods of the archbishopric of seville sevillaorgaccionsocialindexph materials and methodsology materials we used previous studies in the field of servant leadership as references such as greenleaf spears page and wong marín and páez rivera and santos and blanch et al method due to both the organizational structure of religious fraternities and brotherhoods and the lack of previous studies on the issue of their social action we believed that the most suitable option was to conduct interviews based on the questionnaire by rivera and santos to determine whether these groups reflect the characteristics of servant leadership using the same criteria used in this questionnaire we modified the items to adapt them to the object of study as shown in table 1 next a series of technical questions regarding the composition of the teams in charge of social action within the religious fraternities and brotherhoods was incorporated into the questionnaire as shown in table 1 the data were obtained through semistructured interviews conducted orally the population selected comprised those occupying the position of mayor or a position equivalent to director of social action at the religious fraternities brotherhoods and associations of the faithful regardless of the classification of their corporation it must be kept in mind that there are several classifications among religious fraternities and brotherhoods the most common of which distinguishes between glories and penance with a subgroup of the latter called vespers groups with greater recognition are generally those within the penance category rather than vespers of which there is a total of 60 in the city of seville in total there are ˜126 corporations in seville governed by the general council of religious fraternities and brotherhoods of the 30 corporations that participated in this study at least 24 were penance groups one was a vespers group one was an association of the faithful and four were glories the number of participants is a limitation of our study because as the surveys were conducted during the holiday period it was not possible to locate the responsible members of all of the corporations as their usual activities were suspended instrument the first part of the survey follows the model used for rivera and santos questions regarding servant leadership with the necessary modifications to adapt it to this research for the second part of the study a series of ad hoc questions were asked to determine the organizational structure of the team these questions were asked to clarify among other aspects issues such as the number of permanent and occasional members the employment status of permanent members gender distribution participation of individuals with a confirmed disability characteristics of the employment relationship if one exists and the level of satisfaction with the work of the permanent members results the results of the investigation are collected in an explanatory legend and the answers are presented in a table showing the responses of the 30 corporations that we were able to survey which were transformed into a score that varies from completely disagree 3 to completely agree 3 in addition we added a scoring column based on the sum of the questions asked of each corporation a column with the averages of the answers to the last three questions in the survey the average numbers of women and individuals with disabilities in each corporation and the average scores evaluations and percentages of women and individuals with disabilities analysing the data obtained we found some interesting results as show the tables 4 and5 regarding servant leadership although table 3 presents the specific results obtained for each item we shall highlight the following results the lowest possible rating completely disagree was obtained for discussion with the team integrity and role models received a rating of disagree service setting objectives services 2 vision teamwork first the interviewee is greeted and introduced to the project subsequently they are asked about their specific position itemdimension question servant leadership service the corporation is willing to make sacrifices to provide services to others teamwork when the corporation collaborates with other agents it values each of the other agents setting objectives the corporation sets realistic and clear goals service the corporation seeks to serve rather than to be served empowerment it produces great satisfaction within the corporation to help others develop their skills as fully as possible vision the corporation feels that it is called to do something great for society teamwork when the corporation collaborates with other agents it looks for ways to make use of the differences among the other agents management the ideas of the corporation are normally accepted by others as useful and effective role models the corporation never asks others to do what it is not willing to do itself courage the corporation has the courage to do things that are morally right even when doing so may harm it integrity the corporation always keeps its promises and commitments to others humility the corporation does not seek recognition nor recompense for serving others care by the team the corporation listens actively and receptively to what others have to say team discussion the corporation is willing to have its ideas questioned by people close to it to examine servant leadership they are asked can you tell us to what extent the following statements fit your way of being and thinking response options completely disagree strongly disagree disagree neither disagree nor disagree agree strongly agree completely agree to learn about the structure of the teams the leadin was as follows please we would also like to know the following information regarding the team that performs the corporations social action commitment from your perspective with 0 being very poor and 10 being very good how would you rate the commitment of the permanent members to the social activity carried out by the corporation itemdimension work environment from your perspective with 0 being very poor and 10 being very good how would you rate the work environment of the permanent members of the team satisfaction from your perspective with 0 being very poor and 10 being very good how would you rate the teams satisfaction with the work they do response options open 2 and courage received a rating of neither agree nor disagree and teamwork empowerment direction humility and team care received a rating of agree the 75th percentile rating was completely agree the 25th percentile ratings for service 2 empowerment and humility were completely agree in the same percentile 16 3 1 3 3 3 2 3 1 3 3 3 3 3 3 8 3 2 0 0 3 0 0 1 1 1 1 3 2 3 1 3 3 3 3 3 3 2 2 3 3 2 3 3 3 3 3 3 3 3 3 3 3 3 3 3 3 3 3 3 8 3 3 3 3 2 1 3 2 3 3 3 3 1 0 10 3 3 3 3 3 3 3 3 3 3 1 3 1 3 6 2 1 2 2 3 2 1 1 3 1 3 3 3 1 1 3 3 3 3 3 3 3 2 3 3 2 3 3 3 18 1 1 2 2 1 1 0 1 1 1 2 2 3 0 5 3 3 2 3 3 1 2 3 2 3 1 3 2 3 7 3 3 3 3 3 3 3 3 2 3 3 3 3 3 10 1 1 1 1 2 2 1 1 1 1 1 1 1 1 2 2 1 3 3 3 3 1 2 3 1 3 1 1 1 15 3 1 3 3 3 2 1 2 3 2 2 3 3 1 3 3 3 2 3 3 2 3 3 3 2 2 3 3 2 35 3 1 3 3 3 3 1 1 2 1 3 3 3 2 4 3 1 1 3 3 3 1 1 3 1 3 3 1 1 2 0 3 1 2 2 1 2 1 1 2 1 2 3 2 6 3 2 2 3 3 3 1 2 2 1 1 3 1 1 7 3 3 3 3 3 3 3 3 3 3 3 3 3 3 25 1 3 3 3 3 1 1 2 2 3 2 3 3 1 10 3 3 3 3 3 1 3 3 1 1 1 3 3 3 9 3 1 1 3 3 0 1 1 1 0 3 3 3 0 16 3 3 3 3 3 3 3 3 3 2 3 3 3 3 10 3 3 3 3 3 1 3 3 3 3 3 3 3 1 3 1 1 3 1 3 3 3 1 1 1 1 1 1 1 9 2 3 2 3 3 2 2 2 3 2 3 3 2 3 4 2 2 2 3 3 1 3 2 1 1 1 3 3 1 10 3 3 3 3 3 3 3 1 3 3 3 3 3 3 4 3 3 3 3 1 0 1 1 1 0 3 3 2 0 10 average 3133 frontiers in psychology the rating of strongly agree was given for service setting objectives and team care and all other variables received a rating of agree for teamwork empowerment humility of management and team care only ratings of agree and completely agree were obtained the mode of the answers was completely agree except regarding direction for which it was agree the rating of strongly disagree was never given the median rating which is equivalent to the 50th percentile was between strongly agree and completely agree with the exception of team management which still had a median rating higher than agree the lowest score was 10 points the mode was 28 points the average was 3133 points the median or 50th percentile was 325 points the 25th percentile was 265 points and the 75th percentile was 38 points of the maximum value of 42 this work is based on the hypothesis that the organizations analyzed largely conform to the servant leadership model therefore we must assume with respect to the score that the hypothesis is confirmed when a corporation achieves a minimum rating 14 points that is the equivalent of an agree on each question we understood that in order to confirm the hypothesis given the subjective and personal perceptions of each respondent we must obtain an average score indicating an affirmative answer meaning that the sum of the results is at least twice the minimum for the characteristics of servant leadership to indicate ratings of strongly agree or a score of 28 points taking as a reference the results of the descriptive study and the data we obtained another series of results because the mode is 28 points the average is 3133 points and the median is 325 points we could consider the hypothesis confirmed in addition we observed that the 25th percentile of the scores approaches 28 the 50th percentile or median exceeds 28 points and the 75th percentile vastly exceeds it with 38 points out of the maximum of 42 possible which would be equivalent a rating of completely agree on the 14 questions analysing the specific data only 8 of the 30 corporations studied had a score below 28 points and only one obtained less than 14 points this result does not imply that these corporations approach social action incorrectly but that their practices are perceived as less aligned with the servant leader model this implies the existence of a different leadership model which is not necessarily better or worse regarding the leadership team in this section the survey posed some openended questions to which the participating corporations could respond freely we did not expect any specific result and nor did we propose any hypothesis this allowed us to obtain information from the people involved in social action in corporations no information was gathered regarding the number of members in each organization since the same person can be a member of several corporations and participate in all of them in different ways which could cause some confusion therefore we focused on specific data regarding social action it should be clarified that when referring to permanent members we refer to those who hold a permanent position or who always participate voluntarily in social action by directing it occasional members or volunteers are those who participate occasionally and do not direct social action most of the survey items referred to the permanent members mentioned first based on the data obtained the following information followed no participant obtains economic gain from their collaboration of all the existing personnel in the 30 corporations there were only two people hired in different entitieswith employment contracts not necessarily linked to social action regarding the employment status of the participants the majority were employed followed by retirees students and finally the unemployed on average there were proportionately more women than men and the maximum ratings were higher among the women when we analyze the minimum scores and percentiles we found that when the number of permanent members increases women outnumber men in groups with more than six women therefore the proportion of women with respect to men was higher in the 75th percentile of the study population while men outnumbered women in the 50th and 25th percentiles of the study population the percentage of permanent members with disabilities was low regarding respondents assessments regarding the assessments because they were also openended questions we did not propose any initial hypothesis the data indicate that the results were positive always higher than 5 and the average was equally high the averages approached 9 out of 10 points the median was 9 and the mode for all of the items was 10 regarding the percentiles the 25th percentile score was 8 and 75th percentile was 10 regarding the relationships among the servant leadership variables to examine these relationships we created contingency tables for the items that we thought could be dependent using the chisquare test of independence as a result with a 95 confidence level we matched the variables that seemed conceptually closer to one another service and service 2 in this case the contingency table and the pvalue indicate that the hypothesis that these two variables are related must be accepted in fact the greater the agreement for one of the variables was the greater the agreement for the other variable was teamwork and teamwork 2 according to the contingency table and the pvalue the hypothesis that these two variables are related was accepted in fact when there was a higher level of agreement for one of them there was also greater agreement for the other setting objectives and vision according to the contingency table and the pvalue the hypothesis that these two variables are also related was accepted in fact the greater the agreement for one was the greater the agreement was for the other empowerment and courage in this case we can deduce from the contingency table and the pvalue that we must accept the hypothesis that these two variables are not related and are independent management and role models similarly we can determine from the contingency table and the pvalue that we must accept the hypothesis that the two variables are not related and are independent integrity and humility based on the contingency table and the pvalue the hypothesis that these two variables are not related but rather are independent was accepted team care and team discussion similarly it follows from the contingency table and the pvalue that the hypothesis that these two variables are not related must be accepted as they are also independent regarding the relationship between participation and the number of brothers in each corporation for this part of the study we considered the relationship between the number of brothers in each organization and the form of participation fixed or voluntary for data protection reasons the values of these variables cannot be shown in the tables as some corporations can be identified by their membership numbers however the results of the descriptive study can be provided because although they are of interest to the study they are based on data that cannot be used to identify participating organizations during this study the question of the possible relationship between the number of members and their participation in social action was raised actual data on members are difficult to access and validate as they are subject to constant changes hence we cannot guarantee the use of a system of authentication or common verification for this reason we used an estimate of the number of members published annually for all penance and rocieras corporations as a reference however this is approximate data because the number of members varies depending on how many join and leave estimates were published for 27 of the 30 corporations with which we worked and we also have approximate data regarding the number of members in one of the remaining three that was provided by the corporation itself during the interview for the corporations for which we could not obtain an estimate we chose to assign an approximate value based on their characteristics and the number of estimated members in the rest of the corporations the consequences of this decision were as follows not taking into account the corporations without published membership estimates the pearsons coefficient of variation was 009 which does not reliability indicate a linear progression when all the estimated data were used pearsons coefficient of variation was 08 which indicates the possibility of a linear progression however when we added the data for the corporation that provided an estimated number of brothers which was the lowest estimate among those collected pearsons coefficient of variation remained at 08 this implies that the data would have a distribution close to normal for these variables and hence when one of them is known the results for the other are more easily predicted in corporations with fewer members the percentage of participation both fixed and voluntary is much higher because proportionally more group members participate on the other hand when we increased the approximate number of members of corporations for which we estimated membership numbers pearsons coefficient of variation was also maintained at ∼08 in this case we observed in the descriptive analysis that the maximum percentages of permanent members who participate exceeds the maximum percentages of voluntary members who do so although the results indicate that there were more volunteers than permanent members this is because the group of volunteers is normally larger than that of organizers however in table 3 we can observe some exceptions which are affected by the number of members in the corporation regarding the ratings we also analyzed the valuations using the kruskalwallis test by ranks for which we had to use a different distribution of the data as a null hypothesis of this contrast we propose that the distribution of the valuations made by the different corporations is on average the same as for the last three issues raised the result shows that the pvalue is 0399 higher than the usual level of significance of 005 thus there is insufficient evidence to reject the null hypothesis as the distribution of the assessments is the same on average discussion concept evolution and configuration of religious fraternities and brotherhoods to better understand the importance of religious fraternities and brotherhoods we must bear in mind that we are talking about organizations with a corporate democratic structure regulated by both canonic law and civil law in which diocesan regulations also have a very important and direct role some corporations have more than 600 years of history and have been dedicated to social action in the city of seville since their inception different divisions and classifications of these organizations exist including those by moreno and sánchez however other criteria can be added such as brotherhoods based on guild ethnicity class neighborhood open or closed nature penitence glory or sacrament etc it should be added that one cannot always identify a religious fraternity with a brotherhood since in general not all brotherhoods have the rank of a religious fraternity religious fraternities and brotherhoods especially penitential ones with their participation in and organization of holy week are part of popular religiosity the idea of the penance way in holy week is undoubtedly the most wellknown aspect of most of these corporations and their other dimensions and purposes are often unknown the evolution of religious fraternities and brotherhoods and holy week in seville is part of the history of the city itself and has gone through different stages of boom and decline in fact the adjective popular allows us to state that in some cases these organizations have transcended their religious aspect to acquire a certain festive character though they are always linked to ethical social and traditional issues many of the peculiarities both current and historical of these corporations have also been studied in the field of psychology such particular issues include the reasons for participation class differences different forms of participation between men and women or the matrilineal affiliation these characteristics are common in many religious fraternities because they also reflect social evolution the legal representative of the corporation is generally called the mayor while the rest of the group are known as members alongside the mayor there is a managing body called the governing board whose members are democratically elected through universal suffrage among the adult members members of note include a deputycounselor of charity who is in charge of carrying out the corporations charity works these individuals are preferentially selected to constitute the population chosen for the survey translation of the servant leader concept to religious fraternities and brotherhoods as a legal person of great importance in this area is the study by marín and páez which applies the theory of servant leadership to organizations and defines some of its characteristics focusing on entities that follow a business model with workers and clients in this study however we examine religious corporations with volunteers and beneficiaries of social action a perspective that has not been analyzed to date this justifies the need for this study to publicize a previously unknown aspect which allows the perspective of servant leadership to be applied to an organizational model whose purpose is service to society rather than economic benefit thus we can compare the characteristics that identify servant leadership with an understanding of both the natural person and the legal person regarding the natural person as a servant leader we note the characteristics highlighted in the study by villalba listening empathy healing awareness persuasion conceptualization foresight administration commitment to peoples growth and community building in addition as villalba also states this type of leadership does not seek recognition since it believes that recognition comes without having been sought and instead of monopolizing it and boasting the leader always shares it with everyone involved thanks to which others feel appreciated and have the desire to continue contributing to the work they perform regarding the legal entity as a servant leader we follow the proposal of marín and páez which highlights the following characteristics caring for people the most capable and the least capable serving each other is the cornerstone on which a good society is built considering that until recently care was to a large extent given from person to person now the vast majority is mediated through institutions that are often large complex powerful and impersonal not always competent and sometimes corrupt to build a better more just and loving society one that can offer better opportunities to its members the best way to do so is by increasing both the ability to serve and the proper performance as servants of the main existing institutions through new regenerative forces operating from within them we cannot lose sight of the paradox of the lead to serve paradigm which arises from the leaders natural predisposition not to identify him or herself as a selfish leader in these cases the assumption is that the mentality of the corporation itself is the search for service itself along these lines we see that indeed servant leadership is paradoxical because it is difficult to understand that one must lead to serve not to be served the servant leader chooses to serve first and then lead as a way to expand the spectrum of service to individuals and institutions these types of corporations seek to serve and expand their service to more people the concept of the natural person within servant leadership complements the vision of the characteristics that we have seen in the legal person this constitutes a reality within these corporations since given their origins any new corporation that is created is linked to a certain social action related to the cult and the spiritual training of the members although this can be modified over time we must not lose sight of the fact that many of these corporations have their historical origins in guilds or of the influence of the catholic church in spain and how it generated guilds as ways of attending to the needs of their members and others close to that environment by establishing a legal association within the church to raise money without relying on begging and to foster trust through the spirit of charity as a christian virtue an example of this is in the guild or group origins of religious fraternities linked to potters tailors sailors and port workers workers at the royal tobacco factory of seville etc and more modern groups such as the university the civil guard and other military and police bodies students at religious schools and people in other circumstances such as freed black slaves or romani these groups were moved by the needs of the people around them especially when they ceased to be productive which prompted personal and family crises the groups sought a way to assist those in need either by promoting the construction of hospitals and hospices where members could end their days or by directly providing financial assistance to their neediest members with this objective the socalled charity exchange was created to assist widows or orphans and to exercise guardianship and legal representation the characteristics of the corporations have since been modified because their members are now associated with them mainly by family tradition marriage friendship with a member or devotional matters in the same way the social action performed by these corporations has evolved the emergence of the modern state which assumes a governmental responsibility aimed at achieving the characteristics of the welfare state has caused social action to move toward other purposes or to complement the public administration by addressing objectives that it does not of particular importance is the elimination of dependence on the group as a requirement for beneficiaries of aid from a corporation this change has resulted in the opening of social action to almost anyone who requests it with the exception of projects created for specific populations in any case the corporations continue to assume the objective of improving society by taking an ethical and charitable approach to those in need regardless of whether they are members of the organization we observe the characteristics previously proposed by villalba and marín and páez in the corporations perceptions of the purpose of their social action thus it is noted that they seek to positively influence society and individuals acting as their servants in situations of material need but without seeking direct recognition since they understand that they serve society as part of their own institutional nature hence in our survey we did not find responses below the agree value on questions regarding humility application of the servant leader concept to religious fraternities and brotherhoods taking into account these approaches to servant leadership and analysing the characteristics of religious fraternities and brotherhoods as well as the results of the surveys we can conclude that this type of leadership exists both in these corporations and in their relationships with their teams of volunteer workers most of whom are laypeople in the development of their social action particularly striking is the fact that this leadership model is not one that was implemented recently rather it has been a defining characteristic of these corporations for several centuries in some cases however it is necessary to take into account that this study is based on the respondents own perceptions and we could not determine with total accuracy when this specific leadership model was used in each corporation or when a different one was used however we understand that based on the perspective and purpose of corporations whose vision is associated with the charitable nature of the corporation this leadership model applies the corporations surveyed were unaware of the characteristics of this type of leadership and responded critically and sincerely as requested as a result the analysis of the data revealed positive responses regarding the characteristics of servant leadership therefore we can state that the leadership of these corporations for the most part very closely fits the profile of the servant leader in fact we believe that the variety of responses reflects the diversity of each corporation and the respondents and that both the size of the corporation and the amount of time the person surveyed had been responsible for the social action of the entity influenced the results conducting the survey allowed us to verify that the general perceptions of those responsible for the social action of religious fraternities and brotherhoods in seville are very close to the characteristics of the servant leader model thus facilitating the comparison of these corporations with the servant leadership model characteristics of the workers in religious fraternities and brotherhoods the analysis of the results of the second part of the survey demonstrates the existence of some very interesting characteristics of these corporations at least in the entities surveyed a very striking result was the number of participants both permanent ranging from 1 to 35 people depending on the corporation and volunteers which fluctuated from 2 to 100 people the incompatibility of positions is a common characteristic of these organizations thus those with an official position in one council usually may not hold a position in another corporation among the 30 corporations analyzed there were ∼261 people who permanently work for free for social action in seville a city that has a population of close to 700000 inhabitants and includes some of the poorest neighborhoods in europe this figure for permanent staff contrasts with the percentage of members in each corporation which may seem low in relation to this however it must be taken into account that while posts are incompatible membership in different religious fraternities and brotherhoods is not and hence it is common for people belong to several different corporations but not participate equally in all of them another influencing factor is that at present not all members are residents of the city or the geographical setting of the corporation another factor is differences in ages and personal occupations since the members of a corporation can participate in other sections or as assistants and collaborators in social action projects since social action is one form of participation within corporations but not the only one similarly involvement is also based on personal factors since one may participate on the basis of faith or for reasons of culture or tradition in any case the number of volunteers depends on the size of the corporation in terms of its number of members there are very significant differences in this area and size has a decisive influence on a corporations financial and personnel capacities another interesting aspect is the presence of women among permanent workers a fact that is very clear in the proportions of women among the participants the results indicate that based the presence of six women in permanent positions the representation of women will always be superior to that of men however in a greater number of cases no women were involved in the social action of the corporation compared to a single corporation in which no men were involved in social action although womens presence in some brotherhoods has traditionally been minor or even null until the end of the 20th century and the beginning of the 21st century the results of the present study reflect the success of this change which was propitiated so that women could also participate in processions of penance and serve on the governing boards of corporations becoming involved in decisionmaking and management on the other hand the participation of permanent members with disabilities was not exactly high taking into account the existence of various types of disabilities and the fact that participation is free and voluntary quite striking was the presence of people with a disability that prevents them from working who altruistically dedicate their time to managing projects to help others this contrasts with the cases of ngos foundations and companies that specifically hire people with disabilities which can provide tax benefits this also contrasts with the high number of people in fixed and voluntary positions in the corporations surveyed who were employed especially striking was the number of women who in addition to working and caring for their family find time to devote to project management to meet the needs of others voluntarily and free of charge new horizons in research in conducting this study and examining the results we verified the difficulty of addressing these types of questions in the absence of related scientific research valduérteles being the exception in the area of charity for those researchers who deal with the issue of inclusive and sustainable development the possibility of learning about realities and research that offer different approaches to problems by trying to bring about improvements in society becomes especially important this study proposes a different model for addressing the widespread manifestations of poverty and situations of social marginality which underscore the importance of publicizing this model of organizations based in spain and specifically in the city of seville with this study we wish to encourage research and analysis on what may be the leastknown aspects of these institutions outside of the traditionally studied areas and those of more local interest such as the fields of religious history the law ethnological and art we also believe that it would be interesting to deepen knowledge about this reality by comparing the results that we have obtained from the profile of the servant leader in these corporations with the profile of servant leadership among natural persons other classes of legal persons or similar corporations in other geographical locations finally and from the perspective of inclusive and sustainable development such study would allow comparisons with organizational models other than ngos for religious congregations that seek to improve their interventions and achieve greater success in reducing poverty and integrating marginalized populations through private cooperation conclusion given the findings of the study we consider our main hypothesis to be valid the religious fraternities and brotherhoods of the city of seville as private agents engaged in social action operate with a profile very close to that of a servant leader although these entities are legal persons those surveyed demonstrated very natural responses to the types of questions posed demonstrating a high degree of understanding and requesting only specific clarifications with the intention of adapting their response to questions that seemed ambiguous an example of this was that regarding the vision parameter some respondents asked what was meant by something big since based on their responsibility and perception they accepted how limited a social action project can be with respect to number of people in need the characteristics of the needs they could cover as an organization and their own resources also noted was the fact that in the corporations budgets charity or social action accounts for the most significant fixed portion of income and expenses highlighting the fundamental nature of social action for these corporations above other expenses finally we cannot finish without mentioning three important crosscutting issues the first is the importance to a corporation of its titular image and motto titular images always reflect aspects and virtues of the christian faith to encourage greater spiritual and personal growth among members promoting ethical values among subjects in order to improve society through their particular participation in the corporation to reinforce that idea corporations have a shield and a motto specifically the motto serves to reinforce the spiritual mission and social action of corporations consequently the titular image which historically is of a catechetical nature and the motto in its mission of promoting charity as a virtue among members are what provide meaning to the membership of the corporation outside of the traditional or legal arena the second issue lies in the differences in the concepts of charity solidarity and social action in the sphere of corporations the term charity is usually preferred however as valduérteles states charity is a theological virtue that lies in the person and is not quantifiable solidarity is a human virtue that lies in the person and is not quantifiable and social action is an activity that lies in the religious fraternity and is quantifiable we sought to make this distinction clear in the article the final issue relates to the content of the social action of religious fraternities and brotherhoods throughout the article we have discussed the existence of social action among these entities but without specifying its exact content the aim of this work is not to analyze the specific projects of the different corporations to examine whether they meet their objectives how many people they help their budgets etc however for the purpose of this study it is important to at least provide examples of this social action social action as we said was historically linked to assistance for persons belonging to a guild or collective today however such assistance is provided by the public administration through free public services and financial assistance however the assistance provided by the state is not always sufficient or immediate and in such cases corporations play an essential role either through assistance or mediation corporations engage in very different forms of social action which are conditioned by both the size of the entity and the circumstances among the perhaps countless number of actions we can name the following interventions performed by corporations paying occasional bills and invoices obtaining services for free or at a better price through members contributing funds or goods to social commissaries that distribute them to those who need them distributing clothes school supplies or toys creating specialized foundations and centers for certain situations creating specialized treatment centers creating scholarships and study grants cooperating with other agents for social purposes helping people find employment accompanying people who are alone organizing summer camps for children welcoming children from needy countries during the summer helping convents and small religious communities to offset their external dependence or cover some of their needs etc on the other hand after interviewing the respondents and speaking with valduérteles who has researched the aspect of charity among these corporations we must stress the following beyond the numbers money or goods that may be provided there are other benefits that cannot be quantified such as the happiness of those who feel accompanied heard or understood those who feel that they have recovered lost dignity those who are released from a debt or situation from which they see no exit the happiness of those who have participated in a project that has served society and the happiness of children who can maintain their childhood and enthusiasm despite their needs and illnesses data availability statement all datasets generated for this study are included in the articlesupplementary material ethics statement the studies involving human participants were reviewed and approved by comité de ética universidad loyola andalucía the participants provided their written informed consent to participate in this study conflict of interest the authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest

the religious fraternities and brotherhoods of seville spain are among the major agents of the social aid carried out in that city knowing the characteristics of the servant leadership that have been established by authors such as greenleaf 1997 we interviewed several representatives of these institutions to determine if they would meet those characteristics and to what extent they configure their teams in charge of carrying out that social aid our aim was to verify through the rivera and santos questionnaire 2015 which has been modified to refer to a legal person if the characteristics that have been assigned to the concept of leaderserver and that normally apply to a natural person can also be identified in such corporations moreover we sought to take the opportunity to investigate this structure of work in social action and identify the common characteristics if any that make the fraternities and brotherhoods of seville different from other private agents fighting against poverty

introduction early in the covid19 pandemic reports both in media and by international organizations emerged of an increase in domestic violence or risk of such violence in the wake of infection control measures however the picture seems to be more mixed while some countries seemed to observe an increase in reports of domestic violence during the lockdown 1 of society others saw a decline in the reporting of such violence after the first reports of a spike or surge in domestic violence warning voices were raised against unilaterally focusing on trends and changes in rates of violence williamson et al argue that this media narrative implicitly constructs a causal relation between the pandemic and domestic violence and further that this narrative prioritizes a focus on physical oneoff incidents of domestic violence while ignoring coercive control rooted in gendered patterns of domination this critique is corroborated by research that suggests that the pandemic has exacerbated existing structural concerns 1 we use the term lockdown well aware that there are important differences in the way in which different countries have implemented lockdowns during the pandemic one major difference is that in norway lockdown has so far not included a curfew in norway covid19 infection rates and death rates have been amongst the lowest in europe throughout the pandemic for victims of domestic violence and sexual assault and has led to an increase in the severity of violence against women and children dartnall et al similarly argue that we need to shift the emphasis to include questions such as how the pandemic influences the situation for those who live with domestic violence and whether victims have been able to access services the important questions to ask during this pandemic are not whether the violence has increased or decreased we should rather be asking about the impact of the virus and social distancing measures on women and children and whether theyve been able to access services this question is best answered by those working with women and children on the frontline we agree that there is a need to move beyond the question of a rise or decline in domestic violence as well as to move beyond simplistic assumptions that see the pandemic as the direct cause of an increase of such violence hence the main concern in this article is to highlight how the pandemic has impacted the support services for victims of domestic violence and how the frontline workers experience and assess the situation for victims of domestic violence during the pandemic comparative research shows that the overall approaches and responses to domestic violence as well as the models of societal intervention vary across countries in norway this intervention is largely constructed around the protection and support of victims although control aspects and criminal prosecution of perpetrators are also of increasing importance the shelters are thus key informants on domestic violence and provide a privileged vantage point for obtaining knowledge about such violence in norway moreover the shelter leaders and employees are knowledgeable and competent when it comes to handling domestic violence and carrying out risk assessment although the question of an increase or decrease in domestic violence is not the primary concern in this article we consider shelter leaders and employees as being well positioned to observe any changes in the frequency and character of violence in the populations that use their services that are relevant for the services they provide in the following section we give an overview of the development of shelter services in norway and the role of the shelters in combatting domestic violence and providing support for their victims shelters for victims of domestic violence in norway for several decades womens shelters have been important actors in efforts to prevent and combat domestic violence in norway and they have had a pivotal role in the provision of assistance and services for victims of domestic violence as elsewhere in the western countries the norwegian shelters established by activists in the feminist movement in the 1970s were one of the first forms of intervention in domestic violence over the years the shelter movements across the world have played an important role in practicing feminist ideals by focusing on women and their experiences of domestic violence and by raising the topic to its current level of awareness on the public and political agenda the shelters offer lowthreshold temporary accommodation for victims of domestic violence as well as support and assistance for adults and children not living at the shelter a group called dayusers staying at a shelter is free of charge and does not require referrals the shelters were initially staffed by volunteers and relied at least partly on funding from charities and other private donors yet from the very beginning the shelters also received public funding and support from the authorities over the last few decades domestic violence has gained increasing recognition in norwegian society as a social problem demanding the attention and focus of both the authorities and society as a whole in norway the collaboration between the shelter movement policy and research has been a driving force behind improving the shelter services and bringing the issue up in the political arena in 2010 a new act relating to municipal shelter services entered into force in norway it imposed responsibility on all municipalities to offer their inhabitants services according to the requirements of the act the purpose of the shelter act is to ensure the provision of good comprehensive shelter services to women men and children who are subjected to domestic violence or threats of such violence in recent years the focus on children in shelters has increased in both norway and other nordic countries municipalities are obliged to offer adequate and appropriate accommodation at a shelter as well as daytime services such as advice support and guidance today about half of the shelters in norway are run and owned by municipalities or are intermunicipal entities and the rest are owned by private foundations or ngos the large majority of the staff at norwegian shelters are employed fullor parttime and the number of volunteers is very small today almost 60 of the staff have collegeor universitylevel education as of 2020 there were 46 shelters distributed throughout norway a country of 54 million inhabitants because the provision of shelter services is mandated by law these services are fully funded by the local authorities according to a crossnational comparison norway is one of the very few countries in europe that meet the istanbul convention2 requirements for shelter provision however an evaluation of the implementation of the shelter act indicates that several shelters continue to be hindered by limited budgets and the legal obligation to provide shelter services of equal quality and accessibility throughout the country has not as yet been realized due to structural reform after the municipalization of shelter services the number of shelters has been reduced from 55 to the current 46 in some parts of the country large distances are an additional impediment to accessing shelters and other support services moreover the deficiencies in the norwegian states compliance with its human rights obligations to the indigenous sámi people have to be underlined here in 2019 the sámi shelter in karasjok the only one in the country with expertise about the sámi people was closed due to financial problems in the municipality yet research in norway shows that the sámi particularly women and children are exposed to more violence and abuse than nonsámis living in the same region according to the shelter act the authorities must support the shelters and other municipal services as well as ngos so that these can provide comprehensive assistance for the clients after they have left the shelter research and evaluations show however that these stipulations have not been met and there is significant variation within the country in the extent of the provision of followup measures by the municipal authorities each year statistics from the shelters in norway are collected analyzed and published the latest shelter statistics show that 1800 adult persons and 1450 children were residents in shelters in norway and over 2600 persons used the daytime services of the shelters 63 of all residents and 47 of nonresident clients had a nonnorwegian ethnic background thus clients with migrant backgrounds are overrepresented compared to their proportion of the population in general many women and children from ethnic minority families who flee from domestic violence experience multiple constraints in their lives aims data and method this study has two main objectives firstly to examine the responses of shelters and their adaptations to the pandemic and its effects on their services to victims of domestic violence secondly to study how shelters as key informants on the frontline assess the situation for victims including changes in rates and the character of domestic violence as observed by the shelters during the pandemic a webbased survey was distributed to the leaders of all 46 norwegian shelters for victims of domestic violence during the lockdown period in spring 2020 and after the gradual reopening of society in early summer 2020 the survey contained four sections covering institutional adaptations or changes due to infectioncontrol measures and cooperation with other services the shelters suggestions for improvement shelters assessment of possible changes in the number and character of requests from victims during the pandemic the shelters concern about specific groups of victims the shelters were given questions with fixed responses with options such as yesno or they could choose between relevant alternatives from a list for instance different types of measures in response to the pandemic cooperation with particular other services or different forms of corona related violence we included qualitative followup questions to most questions in the survey in order to give the respondents the opportunity to elaborate on their fixed answers the quantitative data were summarized using descriptive methods and the qualitative data were used to illustrate the findings the initial survey was carried out in april and the followup survey with somewhat revised questions in junejuly the response rate was 100 and 80 respectively the time period for filling out the second survey was in the midst of the summer vacation period in norway which may have influenced the response rate the main results from both the initial and the followup surveys will be presented in the next sections first we discuss the institutional changes introduced at the shelters due to the pandemic their cooperation with other services and agencies and the shelters suggestions to improve their services the second part describes the groups about which the shelters expressed particular concerns finally the third part deals with changes in the requests and contacts made by victims to the shelters and the possible changes in the character of domestic violence in this period institutional changes and challenges in norway the shelters remained open during the lockdown period but the majority reduced or adapted their services in line with the infection control measures in particular this affected counseling and advice to nonresident clients group activities and home visits such services had to be carried out primarily by telephone or via digital platforms nine out of 10 shelters reported that they had to establish new communications channels with their users or introduce other new routines for meeting them particularly at t1 several shelters were also obliged to make changes for the resident clients including in the admission requirements for new residents for example some shelters reported that they had to try to find alternative solutions for clients together with other services the police or the clients own networks and other shelters pointed out that they were only able to admit clients who were in acute danger nearly 70 of the shelters reported staff reductions primarily due to employees being in quarantine isolation or on sickness leave but also because of staff members who had to take care leave because of closed daycare centers and schools on march 23 11 days after lockdown shelter employees were defined as a workforce in critical societal functionsthat is their children had to be provided access to childcare and schools despite the lockdown and shelter employees were not to be transferred to other work tasks in the municipalities despite this new rule a third of the shelters reported experiencing staff shortages at t1 as this regulation concerned only families where both parents were defined as workforce in a critical societal function after the gradual reopening of society from may 2020 onwards the shelters were able to relax the restrictions implemented during the lockdown phase yet even at this point of time a third of the shelters reported having to restrict activities and groupbased services to their clients and at t2 two thirds of the shelters reported that they still did not operate in the same way that they did prior to the pandemic as a mandatory nationwide service the shelters are part of the local welfare services and they operate in close cooperation with other services both the initial survey and the followup survey showed that the shelters received support from the municipalities due to the pandemic more than half of them at t1 and above 20 at t2 most shelters claimed that there had been no change during the pandemic in their cooperation with other services offered by municipalities state authorities or private institutions compared to the normal situation prior to the pandemic however this need not necessarily mean that this cooperation was functioning in an optimal way when asked what the shelters considered to be the most important measures or courses of action for being able to deliver good services during the pandemic over 80 of the shelters emphasized that cooperation with local authorities and services was the most important activity almost the same number considered good information from the national authorities about covid19 and protection rules to be key in this respect at both t1 and t2 around 70 of the shelters stated that societal recognition of their role and competence during the pandemic was crucial in the commentary field some of the shelters elaborated on the issue of recognition one shelter wrote we hope that recognition of our work would have financial repercussions in the future for our part we do this because we want to give support to these women men and children not to get recognition several shelters emphasized that their staff had made considerable efforts to continue to support the victims while simultaneously having to follow the infection control rules yet as another shelter points out there is considerable variation with regard to financial resources available to the shelters which also affects their changes in services for ambulatory clients 32 8 reduction of home visits 25 9 changes in services for resident clients 14 7 reduction of staff 14 5 no changes in services 2 13 ability to provide equitable services throughout the country a common concern for the future amongst the shelters was expressed as follows that we have been able to deliver good services during the pandemic is thanks to the willingness of our staff to act to set their own needs aside in order to focus on how to help victims of violence in the best possible way to gain recognition and to be treated as having equal value is important for us in order to be able to continue to deliver highquality services when the authorities regards us as important actors this contributes to feelings of such satisfaction many of our staff are exhausted when they go on vacation in the summer the pandemic will most probably continue and we will have to stick to many of the measures close to 60 of the shelters expressed concerns over their financial situation and resources at both t1 and t2 this comment is illustrative of these concerns the important thing is the external conditions for shelters in general in terms of staffing competence requirements security the situation with covid19 is just one of many challenges had the external conditions of the centers and their clients generally been better the covid19 situation would have been easier to handle several shelters elaborated on their financial worries due to extra costs they had to bear during the pandemic one wrote simply the most important thing is financial compensation for additional expenses along with the financial and staffing situation unsuitable premises were also emphasized the unsuitability of premises became particularly apparent during the pandemic suitable premises are also important old outdated premises that are unsuitable for modern operations and compromise infection control considerations one of the consequences is that not all rooms in the center can be used despite the need to adapt and adjust their services during the pandemic and problems such as staff shortages on the whole the shelters have continued to function throughout the pandemic however the covid19 crisis has revealed certain weaknesses and deficiencies affecting the shelters such as the underfunding and the insufficient external conditions and societal recognition of the role of the shelters these issues have long been a point of concern for the shelters and it was one of the critiques raised in the shadow report from norwegian ngos to grevio the group of experts appointed by the council of europe to monitor the implementation of the istanbul convention a further challenge that was emphasized by the shelters was their concern particularly for certain groups of victims of domestic violence during the pandemic as will be discussed in the following section concerns for particular groups several of the shelters expressed particular concern that some of the most vulnerable groups such as ethnic minorities and children did not get the services and protection they needed in view of the fact that the infection control measures led to a general reduction in social contacts and also in the provision of several other services for victims of violence during the lockdown period 84 of the shelters were particularly worried about the situation of children one shelter described the situation for children staying at the shelter as follows it has been really demanding with all the children who have not gone to school but stayed at the shelter 247 with no alternative activities digital schooling and support for parents in crisis we need more resources for those kids during the reopening phase when childcare centers and schools had opened their doors again this concern was reduced yet even at this point of time 57 of the shelters expressed particular concern for the children about half of the shelters were particularly worried about victims with a migrant or ethnic minority background at t1 and 43 were worried about this group during the reopening phase at both t1 and t2 57 of the shelters were particularly worried about other vulnerable groups such as pregnant women and victims with substance abuse or other additional problems due to the lockdown almost all of the ordinary meeting places for refugees and migrants closed such as language courses or training and local initiatives this made it more difficult to identify cases of violence and to find ways of dealing with it one shelter manager expressed her concern in the following way most services schools daycare centers and language and training courses for refugees and other persons with minority backgrounds are now closed victims of domestic violence from ethnic minority families are often picked up by such institutions even the services for asylum seekers and refugees are closed and labor and welfare offices only offer services over the phone we fear that these groups will not get the help that is so necessary for them and that includes the support we at the shelters could give to them the reopening of society may have led to other services providing referrals and advice to victims of domestic violence one shelter commented the child welfare service and the police are making more contact now after the reopening we also have significantly more families with children now than earlier during the pandemic the reopening of society including public services facilitated the provision of support to victims of domestic violence yet as the comment quoted below indicates the situation remained difficult for several groups when it comes to the children it is a short time since the schools reopened and now it is summer vacationwhich means that the arenas for adult contact outside of the family are limited victims of violence with an ethnic minority background have less access to information and therefore they are more uncertain of the situation than the majority of the population many of the services for people with substance abuse andor mental health problems have been limited for a long period and we have holiday cancellations as well which make them more vulnerable this shelters concern sums up many of the comments at both t1 and t2 on how the restrictions can affect particular groups of victims furthermore the retrenchment or scaling back of other services and activities in society may negatively affect victims of violence in various ways and limit their ability to access a range of services and support including shelter services the worries expressed by the shelters mirror recent studies in norway about the impact of the pandemic and restrictions on minorities diaz et al argue that information about the pandemic aimed at migrant groups was not part of the general pandemic response from the beginning in norway and the information was poorly adapted to their needs another important study was carried out by the mira centera norwegian ngo for women with ethnic minority backgrounds their report emphasizes that many minority women felt that they had been left alone and isolated during the pandemic and that many migrant women were unaware that social services including the shelters remained open during the lockdown period further although information on public websites about services for victims of violence has improved somewhat during the pandemic it is mainly in norwegian this shortcoming also affects the national domestic violence hotline where the english translation of the site is tucked away at the very end of the norwegian text and information in other languages is not provided whether the lack of information in foreign languages partly explains the reduction in the number of victims who contacted the shelters in the early phase of the pandemic we cannot say but it might be part of the shelter staffs worries about the ominous silence during the lockdown this study indicates that the pandemic and the restrictions may exacerbate existing inequalities in society thus worsening the situation particularly for those who are already in troubled and marginalized situations a study focusing on another important service in norway the family welfare service a public agency that provides mandatory mediation for parents seeking divorce and counseling for couples and families concluded that for families with moderate problems the lockdown led to an improvement of family relations while families with less financial resources and with higher conflict levels experienced a substantial increase in problems furthermore a study that was carried out among norwegian 12to 16yearolds in june 2020 a short time after schools reopened after two months of lockdown shows that teenagers in vulnerable life situations were particularly affected by the corona crisis they reported a greater incidence of violence and sexual abuse during the lockdown period than did other pupils girls were more exposed to almost all forms of violence and abuse than boys and the gender difference was bigger and more consistent compared to the situation one year before the outbreak of the pandemic internetbased violence was particularly frequent in the lockdown period the studies referred to above support the observations of the shelters and draw attention to underlying structural inequalities in norwegian society based on for example ethnicity and class and how these became acute and were exacerbated during the pandemic something we discuss further in the concluding section of this article the next section will present the findings concerning the shelters judgment of the frequency and the character of the violence experienced by their clients particularly the issue of possible coronavirusspecific forms of violence and control changes in the number of requests and forms of violence observed by the shelters as shown in table 2 more than half of the shelters reported that there had been a reduction in the number of requests from victims during the lockdown period while a small minority reported an increase somewhat less than a third of the shelters reported that they received the same number of requests as before in the period following the reopening of society the shelters were asked whether they had experienced changes in the number of requests compared with the lockdown phase the shelters have two groups of clients ambulatory clients who are offered counseling and help and resident clients who also receive temporary accommodation at the shelter with regard to ambulatory clients 59 of the shelters that answered this question reported that they had more requests during the reopening period than during the lockdown and 28 reported that the situation was the same only three shelters reported having fewer inquiries after the reopening than during the lockdown period for resident clients 35 of the shelters reported that there are more inquiries now 32 of the shelters said it was almost the same as during the lockdown and 17 reported that they had fewer requests in the reopening period than during the lockdown period some of the shelters added free text commentaries offering more detail on the reported increase or decrease in requests in the t1 survey one shelter wrote we have very few inquiries in comparison at the same time last year we had a completely full house and had to find other offers for 16 families due to lack of capacity now we have only two of eight rooms in use international media reports have drawn attention to the issue of how the coronavirus and infection control measures were used by perpetrators of violence as a new means to pressure threaten or control their partner inspired by these reports the survey addressed possible changes in the character of violence both at t1 and t2 a large majority of the shelters reported that they had not observed any changes in the forms or severity of violence the fact that the shelters had not observed any changes in the character of violence is interesting and contradicts media stories of an increase in severe and lifethreatening violence however given the general reduction in requests and the relatively short time span this finding should be interpreted with caution we also asked more specifically whether the shelters had reason to believe that the covid19 crisis or the infection control measures had been used directly by perpetrators as part of the control or violence strategies to which their victims were exposed at both t1 and t2 a third of the shelters reported that they had observed examples of the virus or the infection control measures being used by perpetrators as part of their efforts to exercise domestic violence coercive control given the short period of time since the outbreak of the pandemic and the lockdown and the reduction in the number of requests in the period we think this is a notable finding even though the majority of the shelters had not noticed any indication of the infection control measures or the covid19 crisis being used directly in this way these findings are confirmed by other recent studies indicating that service providers report changes in the severity of domestic violence and in perpetrators coercive control tactics during the pandemic those shelters that indicated that they thought the covid19 crisis andor infection control measures were being used as a controlling strategy could elaborate on their answers via followup questions and free text commentaries the main categories of coronavirusrelated violence observed by the shelters can be defined as forms of coercive control according to the assessment of the shelters some of the perpetrators used the lockdown to increase their control over their partnerfamily by deciding which infection control rules to observe and which rules to violate by locking up the victim in the home or creating their own corona rules to limit the victims contacts and social relations around half of the shelters that commented on this issue reported that lockdown and the covid19 crisis may have increased perpetrators stress levels coronavirusrelated physical and sexual violence was however mentioned only by a few the free text comments elaborated on how the pandemic and the lockdown could exacerbate the challenges for victims of domestic violence and for particular groups of victims as well as reflections on possible causes of the decrease in requests one comment summarized the worries that were expressed by several shelters we are concerned that the isolation will hit both children and vulnerable groups extra hard because we know from experience that the perpetrator gets more leeway and the threshold of tolerance is low another observation from the commentary field regarding how the corona situation had changed the content in the requests from victims emphasized that the quarantine and the isolation makes the situation more demanding in the first survey the use of the threat i will infect you with the virus was brought up in the commentary field as an example of changes in the content of requests and coronavirusrelated violence as a result we added this question in the second survey however only one shelter responded positively which indicates that the direct use of the virus as a threat may not have been an important misuse of the pandemic situation quarantine rules and infection control measures could also become part of parental disputes over custody and visiting arrangements as this comment illustrates in this case the deliberate noncompliance with infection control measures becomes an implicit threat of infecting the child since it was most poignantly formulated by stark it has been well known in the research on domestic violence and coercive control that abusers use a variety of strategies to control undermine and threaten their victims the different uses of the covid19 situation by perpetrators as tools of coercive control and threatening behaviors align with the observation from studies of intimate partner violence that in an abusive relationship anything may be used as a resource by the abuser to summarize the main findings it can be concluded that the norwegian shelters made an effort to maintain services to those victims of violence who needed to stay at a shelter during the lockdown period and after but most shelters had to reduce or modify their services particularly to ambulatory clients in this period the majority of shelters reported a decline in the number of requests for assistance during lockdown which was a source of concern that some specific groups of victims might not be able to access services the number of requests returned back to normal as the strictest infection control measures were lifted in summer 2020 a third of the shelters reported that they had observed signs of coronarelated violence ie that the virus or infection control measures had been used by the perpetrators as part of the violence although the shelters remained operative the pandemic revealed underlying structural problems in society affecting both victims of domestic violence and the shelters such as the underfunding and lack of resources for shelters and the unequal effects of the crisis on different groups of victims limitations the study has several limitations firstly by focusing only on one service this study does not offer a full picture of all the services available to victims of domestic violence during the pandemic it is also important to note that the findings are based on two snapshotswe need followup studies and longitudinal research over time we are still in the midst of the pandemic and thus this article is based on the limited knowledge we have at present on the whole the survey was rather short because we did not want to put pressure on shelter staff in the midst of the pandemic however in future studies it is important to try to identify additional factors that may be relevant to explore for example it would be important to include questions on staff experiences and the challenges of working during a pandemic further although the response rate was high on both occasions fewer chose to answer the optional qualitative followup questions consequently the sample size for the qualitative part is small and the representativeness in relation to the whole sample of the qualitative comments is low concluding remarks this study reveals that all in all the pandemic has not hitherto significantly impacted norwegian shelters for victims of domestic violence despite the need to adapt to the new situation the shelters have remained open and attempted to pursue a business as usual approach while adapting to the new circumstances caused by the pandemic this lack of dramatic effects seems to contradict the general crisis narrative with regard to victims of domestic violence during the covid19 pandemic the explanation must be sought in the robustness of the shelters and their institutionalization within the general welfare sector in society the shelters are today an integral part of the norwegian universalist welfare state and they are part of and interlinked with other agencies and service providers which together form a comprehensive package of public services to persons exposed to domestic violence however a major crisis such as the covid19 pandemic reveals shortcomings in interagency collaborations including those between shelters and other relevant services such as housing employment health child welfare and criminal justice such cooperation and coordination are of crucial importance especially in the reestablishment periodthat is after the resident clients have returned to their local community the longer the covid19 pandemic continues the greater will the need be for more knowledge about the situation of clients after their stay at a shelter however this relative success story is not without serious flaws and this study also elucidates how the covid19 crisis exposes existing inequities in norwegian society in terms of deficiencies in access to support resources and general societal recognition of the shelters and thus of victims of domestic violence which is noteworthy and important for future policies and practices in this area in norway the welfare state offers shelter services as part of a wide range of publicly funded universal and highquality services nevertheless there is noticeable variation within the country with regard to the financial situation and resources available to the shelters which affects their ability to handle the pandemic in an optimal way in line with other parts of the norwegian welfare state despite its universality the result for the clients is still dependent on the efforts of frontline staff who sometimes go to great lengths to bridge gaps to meet the needs of their clients as one shelter put it that we have managed to deliver good services during the corona pandemic has to do with the willingness of our staff to act to put own needs aside in order to focus more on how to help those who have been exposed to violence in the best possible way as underlined by wood schrag et al there is a critical need to pay more attention to the experiences and challenges expressed by the frontline staff providing support to victims of domestic violence during the pandemic the shelters concern that certain groups of victims including ethnic minorities and migrants and children and families in vulnerable lifesituations have not received the help they need during the pandemic is corroborated by other recent observations and studies in norway whether shelters and other services manage to reach the most vulnerable groups exposed to domestic violence during a pandemic eg women with a migrant or lowincome background children affected by violence and persons with substance abuse mental health problems or other special needs has to be explored in more detail by future research a major societal crisis such as the covid19 pandemic may impact vulnerable groups and minorities especially hard and reinforce existing socioeconomic inequalities and power structures the study indicates that the crisis has highlighted such underlying weaknesses in terms of shelters inadequate resources and facilities and the exacerbation of inequalities in the support system for victims of domestic violence in norway as the pandemic and its consequences intensify its gendered effects begin to attract attention and this study accentuates the need for more gendersensitive and intersectional approaches in norwegian policies on domestic violence in general as well as for tackling the consequences of covid19 bjørnholt and hjemdal highlight how a genderneutral approach may gloss over persisting gender differences in risks and patterns of domestic violence universalist approaches more generally also risk excluding the most marginalized groups as richie has argued the lack of concern for groups who are disadvantaged based on gender ethnicity class and other social divisions and the intersection of social structures of marginalization and exclusion may have important consequences in a crisis the present study of norwegian shelters during the pandemic may be seen as a contribution to research on how services for victims of violence in the pandemic have been resourced and how the services have responded to the present crisis identifying and analyzing experiences and responses from service providers and other helpers who are on the frontline can help to prepare for and strengthen responses to future pandemics and other crises open access this article is licensed under a creative commons attribution 40 international license which permits use sharing adaptation distribution and reproduction in any medium or format as long as you give appropriate credit to the original author and the source provide a link to the creative commons licence and indicate if changes were made the images or other third party material in this article are included in the articles creative commons licence unless indicated otherwise in a credit line to the material if material is not included in the articles creative commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use you will need to obtain permission directly from the copyright holder to view a copy of this licence visit publishers note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations

this study elucidates the responses of shelters and their adaptations to the covid19 pandemic and the effects on their services to victims of violence as well as how shelter managers assess the situation for victims including changes in the rates and character of the violence observed by the shelters a webbased survey was distributed twice to all norwegian shelters n 46 first during the lockdown in spring 2020 and second during the relaxation of infection control measures in summer 2020 the shelters in norway remained open during the covid19 pandemic the majority saw a reduction in the number of requests during the lockdown while the rates returned to normal when the strictest infection control measures were lifted they expressed concern about the decline in requests during the lockdown as well as the wellbeing of some groups such as victims from ethnic minority backgrounds children and victims with additional challenges a majority of the shelters did not report changes in the content of the requests nevertheless a third of them had observed instances of the virus andor infection control measures being used by perpetrators as part of the violence and coercive control strategies the shelters in norway as an integrated part of the welfare state in general seem to have met the needs of their clients during the pandemic yet the study revealed important inequalities and deficiencies in access to services for some groups and in the general support and recognition by authorities of the sheltersdomestic violence shelters for victims of domestic violence domestic violence and covid19 coronavirus and domestic violence social services during covid19 domestic violence and crisis violence and pandemic coercive control margunn bjørnholt

for long our understanding of the role of religion in the modern city has been obscured by the equation of urbanisation with secularisation 1 a strong narrative of urban religious decline has hidden from view the way in which religion has been shaped and framed within the modern city 2 this misconception follows from the equation of the metanarrative of modernisation with secularisation 3 according to this line of thought modernisation defined as rapid fundamental changes like industrialisation and urbanisation which uprooted social relations caused religious decline from the late nineteenth century onwards the western world is said to have become more secular less people went to church and the number of nonbelievers grew in particular the urban areas of europe were said to have experienced a religious crisis caused by the disruption of traditional social relations this orthodox interpretation has been criticised by revisionists who have argued that nineteenth century cities were the most dynamic centres of religious activism which was aimed at countering the secular trend 4 a third line of interpretation as argued by hugh mcleod has moved away from the dominant discourse of religious growth and decline and instead focuses on religious conflict as a means to explain the change from the relatively homogeneous religious cultures which characterised the eighteenthcentury city to the polarised religious world of the nineteenthcentury city to the relatively fragmented religious structure of cities in the later twentieth century 5 both the implicit notion of succeeding stages or regimes and the process of polarisation are also to be found in the work of the historian of dutch religion peter van rooden in his seminal study religieuze regimes van rooden questions the dominant orthodox interpretation of dutch religious history and argues that the history of dutch christianity can instead be best understood by discriminating between different regimes of christendom which have succeeded each other 6 one of the class would be attempting the impossible whereas the government could only try to suppress existing moral excesses by law 12 in the last quarter of the century these liberalprotestant organisations however were gradually replaced by a more diverse set of organisations linked to the four pillars in dutch society 13 as recent research has shown pillarised organisations tried to adapt to and control the force of modernisation 14 they were engaged in setting up relief works and provided for moral stewardship in times of rapid urban change the erstwhile dominant repressive approach was now accompanied by more constructivist views on enhancing public morals members of one of the several antiprostitution leagues which were established in the 1880s and 90s for instance posted in the vicinity of brothels trying to talk potential visitors out of entering 15 the emergence of such new religious relief organisations enhanced the cities religious infrastructure and enforced the involvement of churches in urban life 16 at the turn of the century the netherlands therefore did not witness a process of secularization on the contrary religion was ever present despite fears for an evergrowing apostasy a decline in church attendance and the emergence of a secular labour movement in the early twentieth century religion continued to exert influence on dutch society this article will demonstrate this by focusing on the public and political debate about the emergence of a modern mass entertainment culture despite the existence of different and distinct pillars each with their own views on politics religion and society this article will show that in the early decades of the twentieth century the discourse on the deterioration of morals was dominated by christianbased norms and values like it had been in the nineteenth century protestant nation albeit that those norms and values were now up for debate 17 despite concerns about secularisation religion and christendom more in particular was still a fundamental characteristic of dutch society also and as this article will show particularly in the big city where socioreligious organisations political parties and policy makers were very much engaged in the moral quality of modern urban life this article sets out to explain and exemplify this engagement on the basis of a case study of amsterdam during the interwar years which focuses on the reception of specific elements of modern culture that aroused fears for moral degeneration like the emergence of a new entertainment culture around dance halls movie theatres and jazz clubs it will be demonstrated that the public and political debate on modernity in amsterdam was dominated by religious ideas norms and values by focusing on debates this article follows mcleods earliermentioned third way of looking at the religious development of european cities in the nineteenth and early twentieth century 18 for two reasons this contribution explicitly takes into account the political perspective first in amsterdam politics had a lot to do with religion the city was governed by an orthodoxprotestant mayor and about one third of the city councillors belonged to one of the christian political parties second the emergence of a modern entertainment culture was an explicitly political issue since it affected existing views on and regulations regarding the public order and norms and values in society the first section of this article deals with religious life in amsterdam in the first decades of the twentieth century amsterdams political life will be presented in section two section three discusses the public debate on modern culture finally section four builds on the previous ones to draw some conclusions on the role of religion in early twentieth century dutch society i since the last decade religion has reemerged as a dominant social and political issue in amsterdam and the netherlands as a whole right now the islamic community is the largest religious denomination in amsterdam as shown in table 1 when asked what religion they felt affinity for in 2007 twelve percent of the amsterdam population mentioned the islam followed by roman catholicism with nine percent 19 the influence and presence of the islam in amsterdam has put under pressure one of the most important selfascribed virtues of the city amsterdams tolerance towards people with a different ethnic or religious background debates centre on the role of the islam in public life the construction of mosques civil servants who wear head scarves male representatives of islamic organisations who refuse to shake hands with women the high intolerance of homosexuality among islamic youth and so on 20 the current struggle with the islam in amsterdam has to be seen against the background of the marginalisation of religion as a sociopolitical issue after the 1960s in many aspects this decade marked a radical shift in amsterdam history on the political scene the old elites disappeared or marginalised and were replaced by a new young generation of progressive politicians on the social level amsterdam started to build on its reputation as the libertine and hedonist capital of europe 21 moreover amsterdam turned out to be the centre of most of the protest movements that emerged in the netherlands in the 1960s and 70s the feminist movement different youth movements and the squatter movement 22 according to van rooden the dutch cultural revolution of the 1960s which first emerged in amsterdam marked a regime shift the highly patriarchal and ascetic orthodox protestant and roman catholic religious movements dissolved when their politics of strict morals 18 mcleod european religion 23 19 traditional gender roles and patriarchal forms of authority were undermined 23 as will be shown in section three up until the 1960s their strict morals had been at the basis of the dutch legal moral framework whereas the secularisation of the dutch moral framework took effect after the cultural revolution other secular trends had already been in progress in the early twentieth century orthodox protestants in amsterdam discussed efforts to raise church attendance 24 moreover the tenyearly censuses showed an ever growing number of people who reported not to belong to one of the religious denominations table 2 shows that in 1920 slightly more than 21 of the people of amsterdam did not belong to a church this percentage had almost doubled in eleven years time predominantly at the cost of the dutch reformed church which however remained the largest denomination in amsterdam with almost 30 of the population as a registered member 25 the catholics came in second followed by the sephardic and ashkenazim israelites the decline in church membership was rather evenly spread across the city albeit that the working class districts harbored the highest percentage of apostates 26 these percentages however might lead to a distorted picture first of all the roman catholics managed to cover up the apostasy by an ever continuing flow of demographical growth 27 second membership of a denomination sheds no light on individual religious belief or the social significance of religion in general 28 finally the lack of decent statistical information for the nineteenth century makes it hard to draw conclusions on religious developments like church attendance or membership over time in any case during the interwar years religion still profoundly influenced public and political life in amsterdam in several ways in the 1920s religion was brought into public space more and more on the streets in marketplaces parks and public gardens where soapbox preachers held their sermons and religious brochures and pamphlets were dispersed and sold the catholics in particular lost their fear of publicly expressing their religious beliefs for long catholics in the netherlands had been looked upon as secondclass citizens because they deviated from the protestant norm in the first half of the nineteenth century when the netherlands entered a gradual process of nation building in spite of the separation of church and state dutch identity had been based on protestant norms and values 29 in the second half of the century catholic selfconfidence went up boosted by the reintroduction of the episcopal hierarchy in 1853 towards the end of the century with the birth of pillarisation the protestant nation was progressively dismantled in 1888 a coalition government of orthodox protestants and catholics took office it marked the existence of a new divide in dutch politics and society between believers and unbelievers better known as the antithesis the emancipation of dutch catholics as true patriots however turned out to be a longwinded process it took until 1918 before the catholic political party since long the biggest confessional party in the netherlands were confident enough to claim the prime ministership in amsterdam only after the turn of the century the catholics dared to take to the streets the annual procession to commemorate the miracle of amsterdam eventually drew an ever growing number of participants some sixty thousand people at the end of the 1930s in 1924 thousands of catholics assembled in amsterdam for the international eucharistic conference 30 a final example of catholic self confidence was the missionary zeal of the catholic evidence guild which emerged on the streets of the city in the 1920s according to the guild many members of the working class might be fed up with the church but had not yet totally lost their faith they were still to be saved albeit that the church had to find new ways to do so rather than the traditional dogmatic and intellectual approach the guild for instance used street preachers from a humble background who spoke the language of the working class 31 the guild was one of the many new religious organisations which were founded during the interwar years and were aimed at making converts or at least tried to keep the flock together with the use of street preachers by canvassing with brochures or through the organisation of social activities 32 furthermore the public appearance of religion was enforced through the enhancement of the religious infrastructure of the city thanks to the efforts of local government housing corporations and private building companies housebuilding boomed in the 1920s amsterdam expanded in all directions the citys new residential areas would turn out to be rather religiously and politically segregated roman catholic orthodoxprotestant social democratic and neutral housing corporations each built their own housing blocks which formed a community in itself 33 the blocks often incorporated a club building designated for activities related to the pillar in question a meeting place for the catholic billiard club a conference room for the catholic labour union and so on eventually some of the new districts clearly bore the stamp of their dominant political or religious denomination like communist amsterdam northside the orthodoxprotestant hugo de grootdistrict and the red and jewish transvaaldistrict 34 the suburbanisation of the city was paralleled by a boom in church building in the new neighbourhoods while at the same time churches in the old city centre which slowly depopulated had to close their doors within a couple of years the dutch reformed church opened three new churches across the city and closed down the old zuiderkerk 35 30 de rooy geschiedenis van amsterdam iv 6162 and 136137 31 jos mineur de steen door de ruit roeping 5 429430 there 429 erna treurniet diaconie in crisistijd in c augustijn ed gereformeerd amsterdam sedert 1835 100107 there 106 32 ada g endeveld and wies j houweling op gereformeerden grondslag jeugdverenigingen in de jaren twintig in augustijn gereformeerd amsterdam 7788 there 77 8285 33 beekers and van der woude niet bij steen alleen 34 pp de baar linkse en rechtse buurten ons amsterdam 55 finally religion even made it to the newspapers headlines in 1926 a modern interpretation of gen 3 the speaking serpent led to the expulsion of the orthodoxprotestant minister jg geelkerken who was based in the amsterdam park church geelkerken was supported by his church council but the synod of the reformed churches in the netherlands did not tolerate his behavior geelkerkens expulsion caused a schism within the reformed churches the first sermons of geelkerken after his expulsion were closely watched by the police who guarded the entrance of the park church to prevent public unrest 36 in essence the expulsion of geelkerken was caused by different views within the reformed churches on the relationship between modernisation and religion geelkerken has been typified as the representative of the youth within the reformed churches in the netherlands in this case youth was directly linked with modern religious views 37 geelkerkens modernist religious ideas indeed particularly appealed to intellectuals of the post war generation 38 apart from this intrareligious conflict amsterdam also witnessed clashes between different religious groups in the 1920s the activities of the catholic evidence guild caused public unrest the members of the guild were wellknown for their rather provocative public sermons in which protestants socialists and communists were abused on many occasions the police was forced to intervene when members of the guild who preached their sermons in parks and public gardens in the vicinity of working class neighborhoods were besieged by angry opponents 39 the chief of police decided to ban the guild from the public parks and gardens in amsterdam the religious bull fights however did not cease and the mayor therefore decided to ban all street preachers from the streets of amsterdam for one year 40 all in all where statistical information might lead us to the conclusion that religion gradually disappeared from dutch society developments in amsterdam alone point to the contrary ii on a political level amsterdam had been a predominantly liberal city right from the introduction of local democracy in 1851 up until the end of the first world war amsterdam was governed by liberal mayors moreover liberal governors dominated the board of mayor and aldermen most of this liberal elite belonged to the predominantly moderate dutch reformed church which was as shown in the first section the most dominant religious denomination in amsterdam up until the 1920s looking at the religious background of the councillors throughout the nineteenth century the composition of the city council did not reflect the religious relations in amsterdam catholics in particular were underand dutch reformed overrepresented the situation however changed at the turn of the century when the liberal political dominance came under pressure from the confessional political parties and the social democrats who managed to mobilise a large part of the new electorate citizens who acquired the right to vote thanks to a lowering of the census as shown in table 3 this development was reflected in the religious composition of the council the loss of dutch reformed dominance went hand in hand with the rise of the number of catholic and jewish councillors the latter predominantly belonged to either the socialdemocratic or the communist party moreover the number of nonbelievers councillors who stated not to belong to one of the religious deonominations increased from 64 percent in 1899 to 244 percent of the city council members in 1914 this percentage would have been even higher when one takes into account the fact that many of the jewish councillors felt no connection with the jewish religion 41 meanwhile however the number of councillors belonging to a confessional political party reached an all time high as shown in table 4 both the leftwing political parties and the confessional parties were the victors of the first post war elections in 1919 they gained most from recent changes in the electoral law like the introduction of proportional representation and general suffrage which permanently ended the liberal dominance in amsterdam in a political sense the liberal city would be replaced by an interesting and sometimes fiery mix of socialdemocratic confessional and to a lesser extent liberal politics and policies looking at the distribution of seats in the city council the confessional political influence even reached its peak in the 1920s with one third of the councillors belonging to one of three confessional political parties the orthodox protestant arp the roman catholic party and the predominantly dutchreformed chu despite their religious differences these parties cooperated pretty well they for instance established their own club of confessional council members which met a couple of times per year the confessional wings figure heads were councillor carl romme and mayor willem de vlugt romme was a catholic lawyer who headed the catholic party in the city council and emerged as the prime opponent of the social democratic governors of the city he was a neothomist who criticised the existing liberal democratic order and urged for a christian corporatist state romme tried to implement some of his corporatist ideas in amsterdam but almost without any effect 42 de vlugt was an orthodox protestant former alderman who was appointed to the office of mayor by the queen in 1921 like romme de vlugt had established himself in amsterdam local politics as an opponent of social democratic municipal policy before his mayorship former contractor de vlugt had been responsible for the citys public works department 43 at first de vlugts religious background did not appear to exert much influence on his political and administrative outlook his electoral campaigns lacked any religious undertone de vlugt presented himself as a selfmade man and a champion of private enterprise 44 during his mayorship however the apparent effect of his religious beliefs on his public policy would cause disturbance de vlugts appointment as mayor of amsterdam was not undisputed first of all he represented one of the smallest political parties in amsterdam in its heyday the orthodox protestant party arp won only four out of the 45 seats in the city council moreover his political opponents the social democrats and the old liberal elite in particular feared that the mayor might try to impose his religious views on the city together with 51 percent of the amsterdam population de vlugt was a member of the reformed churches in the netherlands a rather small and orthodox denomination according to a liberal newspaper in amsterdam more than in any other city in the netherlands a wide gap existed between the orthodox protestant faith and the views and beliefs of the citizenry in general during his mayorship de vlugt nonetheless managed to gain popular support amsterdam newspapers of all denominations repeatedly praised his indefatigable dedication impartial stance humour and debating technique hailing him as an amsterdammer in the true sense of the word apparently de vlugt had managed to find the right mix between his own personal political and religious background and the traditions and expectations surrounding his office on official public occasions de vlugt for instance used the old customs and traditions surrounding his office as a way to transcend his religious and partisan background and become a mayor of all citizens of amsterdam 45 as far as politics was concerned de vlugt certainly did not hesitate to express his religious beliefs in public as will be illustrated in the next section iii in the 1920s big cities like amsterdam experienced the emergence of a modern mass entertainment culture an evergrowing amount of movie theatres the introduction of new and highlydebated dance styles like the shimmy and charleston and indecent revues presented new challenges and choices concern about the immoral character of certain elements of modern culture especially concerning their influence on the youth was widespread city councils debated the admissibility of dancing in public bars and restaurants and of plays and revues with a particular sexual undercurrent as far as the moral order was concerned members of all political parties to some extent contested the influence of certain elements of modern culture on adolescents in particular dissension however arose on the issue of governmental interference to what extent could the government be held responsible for regulating and containing the excesses of modern culture in amsterdam mayor de vlugt was evidently involved in these debates because of his formal responsibility to maintain public order and uphold public decency de vlugt advocated a strong policy of government censorship the mayor did not hide the fact that he at least partially based his decisions on his orthodox protestant faith de vlugts rather strict moral policy met with criticism from the city council where communists some socialdemocrats and liberals opposed the mayors alleged efforts to impose his faith on the citizens of amsterdam 46 in order to properly value the debate on modern culture in amsterdam the national political debate on moral issues needs to be explained briefly as mentioned in the introduction since the turn of the century the fear for moral decay was omnipresent with a confessional coalition government in power dutch parliament started discussions on a public decency law which was proposed by the catholic 45 kaal het hoofd van de stad 4750 46 ibid 105123 minister of justice erh regout in 1911 his bill radiated the widespread fears for moral degeneration caused by pornography prostitution contraception propaganda and homosexuality although liberals and social democrats criticised the law as a means to impose the christian faith on the nation as a whole through strict legislation many agreed on the fact that these affairs posed a threat to society 47 it seemed that regout was right when he stated that dutch moral standards were evidently dominated by generally endorsed christian norms and values 48 the following years the national government focused on the demoralisation among the youth in its 1919 report the state commission for youth development concluded that industrialisation urbanisation and the experiences of the first world war had caused demoralisation in order to stop this process the youth needed to be disciplined not just through repressive measures but in a constructive way the latter approach was picked up by the pillars during the interwar years pillarised youth organisations flourished they provided for a social safety net which had to lure the youth away from the baneful influences of modern culture 49 this however was not enough according to many administrators and politicians who emphasised the need for tight regulations one of the elements of modern culture which roused fears among politicians and social organisations of all denominations was dancing in public in bars restaurants and the newlyestablished dance halls traditionally dance had been a custom among the amsterdam elite asking a lady for a dance an english waltz for instance was one of the first steps on the way to a close relationship these elitist balls however were not a public event the amsterdam lower class also liked to go to dance especially during the annual carnival at least up until 1875 when the liberal local government decided to abolish the event because of its immoral character carnival was equated with alcohol abuse and indecent behavior 50 after the first world war dance emerged in a different guise as an integral part of urban nightlife in which members of all classes were engaged 51 in amsterdam dancing in public however had been forbidden for decades because it posed a threat to public decency 52 the director of the municipal health board even expressed his fears for an increase of the number of venereal diseases if dancing in public would be allowed 53 in the netherlands mayors bore responsibility for dance regulations since the municipal law of 1851 had charged them with watching over shows and performance like dance theatre and film performances 54 where rotterdam and the hague two other major cities in the western part of the netherlands harboured several dance halls initially mayor de vlugt resisted the pressure from bar and restaurant owners to legalise dancing in public 55 de vlugts stubborn stance met with fierce resistance it was held against him by liberal and some social democratic councilors that he was trying to force his religious and moral views on the citizens of amsterdam caricaturists depicted de vlugt as an oldfashioned puritan with victorian morals 56 according to orthodox protestant principles the authorities indeed had to act as an instrument of the common grace in their battle against the sinful elements of modern culture 57 de vlugt in turn certainly referred to the fears among confessional groups in amsterdam for the devastating influence of the new dance styles on morals and sexual behavior in addition however he could also point to the widespread dissatisfaction with the excesses of modern culture among nonconfessional groups like some social democrats who criticised dancing as a symptom of degeneration and preferred their own socialist folk dances 58 eventually some confessional councilors advised de vlugt to allow for public dancing in order to be able to control and regulate it in close consultation with the chief of police de vlugt handed out dance permits to seven highly reputable places in the city centre 59 in this case local government managed to at least contain an element of modern culture with the support of confessional political parties and with reference to complaints from religious as well as nonreligious groups at the same time through the governmentcontrolled establishment of dance halls the local government managed to reconcile modern culture and fears for moral degeneration the influence of confessional views on modern urban society was also articulated in the local governments efforts to maintain sunday rest personally de vlugt strictly observed the sunday when he visited an evening performance in the city theatre at saturday night de vlugt always left before midnight 60 legally public attractions like dance were only allowed when all religious services were finished in practice the sunday law which dated back to 1815 was a dead letter in the 1920s the liberal mayor of the hague jan patijn urged the national government to adjust the existing regulations to the spirit of the age which according to patijn called for a more flexible approach 61 in amsterdam however the antiquated sunday law was well observed amsterdam dance regulations forbade dancing on sunday which again caused annoyance among bar and restaurant owners at first de vlugt refused to yield to the protests arguing that a large part of the amsterdam citizenry wanted the sunday to be observed not only confessionals but also social democrats for whom a day of rest was an element of social policy as mayor of all citizens of amsterdam de vlugt said to feel obliged to make a stand for their opinion moreover according to de vlugt the people who urged for the abolishment of sunday regulations were primarily motivated by financial gain at last de vlugt had to cave in when a majority of the city council urged him to relax dance regulations and allow for dancing on sunday afternoon 62 the defeats de vlugt suffered might be interpreted as a defeat for the confessional pillars christian moral framework in fact the discussions on modern culture in amsterdam catalyzed a broader political and public debate about the impact of modern culture when the amsterdam city council discussed the dance ban the mayor of the hague for example decided to tighten up dance regulations moreover the predominantly confessional national government stepped forward and established national regulations for specific elements of modern culture in 1928 a national movie censorship board was created the first chairman was a social democrat the following year a national commission started an investigation into the dance question one of the members of the commission which included members of all pillars was the liberaloriented amsterdam chief of police hj versteeg in its final report the commission stated that dancing was a symptom of moral degeneration which needed to be regulated by the government in order to prevent decay 63 in 1933 the national government indeed issued national dance regulations 64 in amsterdam liberals and social democrats together indeed had the political power to enforce a more relaxed policy in regard to specific elements of modern culture yet the debates about modern culture both in amsterdam and on the national level were dominated by a christian moral framework iv during the interwar years religion still made itself felt in amsterdam political and public life during the nineteenth century a moderate liberalprotestantism had formed the backbone of dutch society with the rise of pillarisation the unity of the protestant nation which in fact had rather been the unity of the liberal elite broke up into four parts pillarisation cleared the way for religious diversity and therefore contributed to an intensified religious life as the discussion of religious activities in amsterdam has shown simultaneously pillarisation implied the creation and organisation of secular groups like the social democratic labour movement who identified itself as nonreligious nonetheless despite significant differences of opinion regarding religious dogmas and their formal implementation in politics and administration as manifested for instance in the debate about modern culturemembers of all four pillars and dutch citizens in general observed christian norms and values the breaking up of the protestant nation therefore did not imply a gradual process of secularisation on the contrary as the debate about mass entertainment has shown religious and secular groups shared fears for the impact of modernisation on the christianinspired norms and values of dutch society in amsterdam de vlugts rather strict moral policy met with criticism from the city council where liberals and leftwing political parties opposed the mayors alleged efforts to impose his faith on the citizens of amsterdam de vlugt however catered to the fears among many 62 ibid 120121 63 rapport der regeeringscommissie inzake het dansvraagstuk 64 citizens confessional and nonconfessional about the effect of modern culture on public morals by the early 1930s policy on moral issues would be implemented at the national level by the confessional coalition government as nationwide regulations concerning movie censorship and dancing were decreed at the same time modern norms and values were evaluated discussed and in some cases assimilated some religious organisations even adopted sports music dance and other forms of entertainment in order to be able to control and monitor potentially risky behaviour 65 the government in turn both on the local and the national level aimed to regulate specific elements of modern culture in order to prevent moral degeneration christian norms and values were at the basis of these regulations and also dominated the public and political debates about modern culture moreover religion did not simply disappear under the pressure of modernisation but took a different shape in form and content modernisation in fact contributed to countering of the supposed threat of secularisation a modern phenomenon like mass political movements contributed to the integration of orthodoxprotestants and catholics into larger communities in addition many of the religious movements used elements of the new mass culture like film radio cars with loud speakers wellillustrated brochures professional propaganda committees and mass meetings to inform supervise and discipline the religious masses 66 finally the public religious revival as manifested for instance in the popularity of catholic processions can be interpreted as a modern phenomenon in itself the emergence and growing presence of public religious activities coincided with developments on the sociopolitical level the interwar years were the heyday of open air mass meeting of political parties parades and torch light processions the urban arena was filled with highly symbolic and spiritual events which appealed to and stirred the imagination of the modern urban citizen 65 paul luykx andere katholieken opstellen over nederlandse katholieken in de twintigste eeuw 228230 66 joris van eijnatten and fred van lieburg nederlandse religiegeschiedenis 316

according to the statistics the dutch capital amsterdam was becoming ever more secular during the interwar years 19181940 this article however argues that religion in amsterdam continued to have a big impact on urban government and society during the interwar years social and political debates about modernisation and the emergence of mass entertainment in particular were strongly influenced by religious ideas norms and values amsterdams public sphere was still charged with religion 1 the author would like to thank paul van trigt and matthijs wieldraaijer for their comments on an earlier draft of this paper 2 robert a orsi ed

users 2 reflecting both the carers and service users situations makes these instruments attractive for a comprehensive assessment of longterm care from a qol perspective ascotcarer was developed in england and aims to measure qoloutcomes of service provision in informal carers 2 the instrument consists of seven distinct domains to capture areas of adult informal carers everyday life that may be affected by ltc services andor services for informal carers 39 the domains address occupation control over daily life social participation and involvement selfcare personal safety feeling supported and encouraged and space and time to be yourself taken together these domains form a concept known as longterm care related quality of life also commonly referred to as social care related quality of life in the english original 9 a survey instrument that captures the effects of ltc service provision on the caregivers qol contributes to improving empirical evidence and thus to a better understanding of how ltc services meet the needs of informal carers in different aspects of their lives the ascotcarer instruments consist of an interview version with four response levels and a selfcompletion tool with four response levels 1 which reflect different outcome states ideal state individuals preferences are met no needs individuals needs are met but not to the desired level some needs there are unmet needs but no health implications highlevel needs needs have an immediate or longerterm health implication 29 the total ascotcarer score is the total raw score of the seven domains and ranges from 0 to 21 as each domain represents a distinct aspect of the latent construct scrqol weighted combinations of indicators are recommended ascotcarer was developed as a preferenceweighted measure 9 to reflect the value of the care serviceinduced gain in qol the ascotcarer instrument has gained considerable interest in nonenglishspeaking countries and has been translated into japanese dutch and finnish 2 the availability of instruments in different languages makes it possible to investigate qoleffects of ltc service provision on informal carers across nations and within a country among speakers of different languages a culturally valid adaptation of the ascotcarer instrument can contribute to strengthening the evidence base for policy decisions on how to improve ltcservice provision and the living situation of informal carers for the translated instrument to be used with confidence there needs to be crosscultural equivalence between the valid translated and the original questionnaires 10 methodological approaches aiming to establish and evaluate crosscultural equivalence in questionnaires address both the translation and cultural adaptation process and the assessment of measurement properties of the translated instrument translation and cultural adaptation seek to improve equivalence on a semantic idiomatic experiential and conceptual level 11 for this purpose systematic multistep guidelines and qualification recommendations for key actors involved in this process have been established the assessment of the measurement model of the construct is essential as it provides the starting point for the choice of methods to evaluate the measurement properties of the culturally adapted instrument reflective and formative measurement models differ in terms of the relationship between the construct and its indicators 14 with respect to the nature of the construct the direction of causality and the characteristics of indicators 15 in formative models to which the ascotcarer instruments choosing what to do and when to do it and having control over their daily life and activities 3 selfcare feeling able to look after oneself in terms of eating well and getting enough sleep 4 personal safety feeling safe and secure with concerns about safety can include fear of abuse or other physical harm or accidents which may arise as a result of caring 5 social participation and involvement being content with their social situation whereby social situation includes the sustenance of meaningful relationships with friends and family as well as feeling involved and part of their community 6 space and time to be yourself having space and time in everyday life enough time away from caring to have a life of their own outside of the caring role 7 feeling supported and encouraged feeling encouraged and supported by professionals care workers and others in their role as a carer 1 acukascot tools 2 acukascot trans latio ns or short wuacat ascot conceptually belong to a latent construct is formed by its items variation in the latent construct of scrqol is caused by variation in the ascotcarer domains these seven domains define the construct and are thus not interchangeable nor do they share a singular common theme adding or dropping an ascotcarer domain may change the conceptual meaning of the scrqolconstruct in formative measurement models content and construct validity thus play an important role for assessing validity defined as the extent to which the interpretation of the results of the measure are warranted 16 at the score and item level methods to assess structural validity such as confirmative factor analysis and internal consistency measured by cronbachs alpha are appropriate for reflective but not for formative models in which items may correlate positively negatively or not at all 14 the aim of this study was to translate and culturally adapt the original englishlanguage ascotcarer instruments into german and to examine aspects of validity of the translated instrument we report on the results of assessing linguistic and content validity as part of the translation and adaptation process in addition we investigate construct validity of the translated measure using survey data for testing expected relationships of the german ascotcarer instrument with comparator outcome measures and with selected subgroup characteristics of informal carers as the ascotcarer instrument follows a formative model each domain is relevant for defining the latent construct thus we assess construct validity on both the score and item level of the translated instrument we shed light on challenges for cultural adaption and validation and discuss solutions to these challenges that may inform future studies on adapting the english ascotcarer instrument into other languages a valid german version of the ascotcarer instruments will be a useful tool for national and crossnational surveys on the effects of ltc services on the qol of german speaking informal carers the rest of the paper is organized as follows first the methods section describes the approaches applied for cultural adaption the methods for assessing linguistic content and construct validity then results of the current study are presented followed by a discussion of the main findings and comparison to previous work on validation of the original english ascotcarer methods ascotcarer translation into german and cultural adaption the ascotcarer instruments were translated from english into german between june 2015 and march 2016 by the austrian research team in cooperation with the translation agency pharmaquest and the english ascot development team in line with ispors principles of good practice for the translation and cultural adaptation process for patientreported outcome measures 12 key actors and methods were chosen to ensure appropriate crosscultural equivalence of the english and german ascotcarer the translation company involved four bilingual translators an incountry investigator familiar with the countrys care practice and one independent proofreader the austrian research team had considerable experience with ascot as well as with care policy and practice in german speaking countries the ascot development team was previously involved in the cultural adaption of ascot into other languages figure 1 describes the steps of the translation and crosscultural adaptation process 17 following wild et al 11 the ascotcarer concept clarification guide previously produced by the translation company and approved by ascot development team defined the conceptual meaning of each item and its response options of the ascotcarer measures based on this guidance translators native in german and fluent in english drafted two initial translations these were then reconciled into a single version by an incountry investigator who held a degree in translation and interpreting and had worked as a nurse the revised version was backtranslated into english independently by two translators native in english and fluent in german for further review by the translation agencys incountry investigator the ascot development team and the germanspeaking research team step 6 of the ispor tca guideline addresses the process of harmonization which aims to consider all new translations as at the time of translation german and finnish versions were the first ascotcarer instruments to be translated the austrian and finnish teams shared and discussed their results at key steps 5 and 7 of the adaptation process going beyond the ispor tca guidelines the revised german version was then proofread by an independent translator not previously involved in the translation process and reviewed by the austrian research team who also conducted professional reviews with an austrian care worker and a care manager then cognitive debriefings with five informal carers were carried out by the austrian research team and comments were sent to the translation agency the translation agency reviewed the results of the cognitive debriefing and made amendments where necessary the prefinal version was proofread by the incountry investigator before being approved by the translation agency the original english version and the final german translation of the ascotcarer instruments are available on the ascot website data collection we used two data sources to improve cultural adaptation and to assess the construct validity of the german version of the ascot interview for informal carers cognitive debriefings as part of the translation and adaptation process aimed to give insight into the understanding of question and response option intent and the meaning of terms to the respondents two researchers trained in conducting cognitive interviews with older people were provided with a comprehensive interview guide that comprised general instructions for the interviewers as well as tasks and questions for the interviewees right after each ascotcarer item and the related set of response options all cognitive debriefing interviews were recorded after each interview experiences and first results were reflected on in the austrian research team as per the ispors tca group 11 and the translation agencys recommendations 17 five facetoface cognitive interviews were carried out in november and december 2015 with the possibility of increasing the sample size if needed as the initial analysis of the transcripts showed a great deal of overlap in how the respondents understood the items and little variation in terms of the types of misunderstandings no further interviews were carried out the respondents were informal carers whose relatives received home care services from care service providers in vienna each respondent was asked to fill out a copy of the whole translated questionnaire to comment on the wording of questions and response options that were difficult to understand and to suggest alternative wordings throughout the process the cognitive debriefings with informal carers combined the thinkaloud method with verbal probing techniques 18 in addition crosssectional quantitative data on informal carers of home care service users were collected via a survey in 201617 as part of the excelc project in austria in a first step home care service users in all nine austrian provinces were recruited for study participation in cooperation with the federal ministry of labor social affairs and consumer protection as well as local authorities and care organizations service users who reported receiving informal help were asked to provide contact information for their main informal carer who was then interviewed facetoface using a standardized questionnaire in total 344 informal carers of ltc service users were interviewed across all nine austrian regions using computeraided personal standardized interviews designed by the online survey software qualtrics 3 the interviewers used showcards for the ascotcarer section in the questionnaire details on the data collection are reported elsewhere 19 assessing linguistic and content validity of the german ascotcarer cognitive interview transcripts were used to assess linguistic and content validity to inform changes needed to further improve the crosscultural adaptation of the translated ascotcarer linguistic validity ensures the conceptual and linguistic equivalence between the original and translated version of the instrument 20 an itembased analysis was performed in order to identify discrepancies in meaning between the original and translated versions of ascotcarer items or response options it consisted of summarizing responses identifying problem areas and proposing suggestions and amendments where needed 21 content validity refers to how well an instruments content reflects the constructs to be measured 22 and whether it is comprehensive understandable and acceptable 23 cognitive interview transcripts and the ascot concept clarification guide 912 were used to assess whether the translation adequately reflected the original content of the ascot items and response choices assessing construct validity of the german ascotcarer survey data were taken to assess the construct validity of the german translation of the ascotcarer instrument the cosmin checklist 24 recommends hypotheses testing for investigating construct validity of the translated instrument 2425 we performed a series of bivariate tests of association to examine expected relationships between the ascotcarer measure with comparator outcome measurement instruments to assess convergent validity and with selected subgroups of informal carers to evaluate discriminative or knowngroups validity a complete overview of the measures expected to be related with the german version of the ascotcarer instrument is given in table 8 in the online appendix based on theoretical considerations or previous empirical evidence we expected the overall ascotcarer score to be related with scores of comparator outcome measures such as qol and healthrelated qol as well as indicators of care experience and care burden 3 the variables used for testing the hypothesized relationships include selfperceived quality of life as a seven point measure and healthrelated qol measured by eq5d3l items and the eq5d index as indicators of care burden we used the carer experience scale 4 the zarit burden interview using the fouritem screening version 28 questions on service users cognitive performance and behavior and care intensity measured in hours to evaluate the validity of the individual ascotcarer domains we used items of the outcome measures that are expected to reflect the individual domains of the translated measure for the comparison between subgroups of informal carers we compared informal carers with high and low care intensity carers opportunity of getting break from caring or not and informal carers who cared for relatives or nonkin withwithout cognitive skills or challenging behavior we also used selected items of comparator outcome measures to form groups of carers to investigate the relationships with selected ascotcarer domains for ascotcarer scores related to comparative outcome scores we used spearmans rho to assess correlations thresholds for association effect sizes were chosen according to cohen 29 fishers exact tests and oneway analyses of variance anova were used to test the hypothesized associations for ascotcarer domains benjamini and hochberg 30 correction for multiple testing was applied for anova results omega squared was chosen to assess effect size as it is less biased then eta squared in smaller samples 31 for the thresholds see cohen 29 convergent validity is perceived as adequate if more than 75 of the expected relationships can be supported by the analysis results or if a correlation between the measures expected to be related is stronger than 05 32 all statistical analyses were conducted in stata v15 33 results part 1 cultural adaptation during the translation process some sections of the translation of the ascotcarer instruments into german required cultural adaptation to appropriately reflect the meaning for the germanspeaking target group first a few english expressions challenged the forward translation into german as there was no meaningful direct translation where no appropriate final wording was found in the translation process alternative expressions were tested in the professional review and cognitive debriefing phases second we found that some translations into german resulted into back translations that did not literally match the original because of idiomatic expressions which were preferred to literal translations 3 third contemporary german language seeks to account for the gender of the actors eg der interviewer die interviewerin as english usually has no grammatical gender the gender of german nouns added complexity to sentences referring to actors last but not least cultural adaptation was needed for the terms referring to specific actors services and institutions in the english and austrian longterm care systems linguistic and content validity of the german ascotcarer linguistic and content validity were also evaluated by cognitive debriefing interviews five female informal carers aged 4672 caring for their relatives between one and 20 years were involved in the cognitive debriefing to assess how well questions and response options were understood and whether the wording was appropriate the cognitive interviews showed that the respondents comprehension of the german translation of the ascotcarer instrument was satisfactory as they were able to adequately explain their responses with respect to each of the ascotcarer domains minor changes to the wording were made in cases where at least one interviewee expressed confusion or ambiguity or misunderstood a part of the item not hilfe these changes to the translation were made in accordance with the english ascot development team respondents generally understood the four response options as intended and were able to distinguish between them without difficulties we used different german expressions for the ideal state phrased as i want in the original english tool as they seemed more suited to the respective specific contexts the control over daily life domain could not easily be translated over thus two options for an adaptation were tested with informal carers the cognitive interviews for this domain revealed that option 1 nach eigenem ermessen was perceived as too broad a concept whereas option 2 selbstbestimmt gestalten was viewed as more specific and tangible the second option was better understood and therefore used in the final questionnaire for the quantitative data collection the domains selfcare social participation and involvement and occupation were understood as intended as interviewees preferred short names for ascotcarer domains the final wording for the social participation and involvement domain was sozialleben instead of soziale kontakte und engagement im gesellschaftlichen lebens one of the response options for the occupation domain was changed to ich verbringe etwas aber nicht ausreichend zeit instead of ich verbringe einige aber nicht ausreichend zeit as the german term einige was understood to mean a lot of the german translation of the questions about feeling supported and encouraged was associated as intended with the feeling of appreciation and empathy from others but also with financial support some respondents thought about having support in general while others reflected more on the actual support they were receiving by particular care workers or services informal carers who were not in direct contact with care workers seem to be less likely to feel supported by them and tended to think about support in more general terms for one respondent the idea of feeling supported as an informal carer did not seem relevant personal safety turned out not always to be understood in the same way some respondents did not find it easy to define or delimit the concept of personal safety and included financial security in addition some reflected on safety in connection with formal help feelings of better safety seemed to result from receiving regular formal help and from having trust in the care workers on the other hand some characteristics of service provision such as frequent changes of care workers seemed to negatively affect feelings of safety while some respondents refer to injury risk and physical strain due to caregiving others had difficulties to understand how safety is related to their caregiving and had a different idea of safety in mind than being safe from accidents and abuse these different ways to interpret personal safety stress the importance of using the interviewer prompt with this domain the german translation of the questions about space and time to be yourself captured as intended the carers ability to have enough time away from caring and to have a life of their own outside of the caring role one respondent interpreted space literally as having a separate apartment not shared with the caredfor person and thus having a life outside of the caring role based on these findings a few recommendations for amendments to the questionnaire were sent to the translation agency which incorporated changes in consultation with the austrian researchers and the ascot development team the translated version was then taken forward in the field phase results part 2 survey sample characteristics in total 344 informal carers completed the standardized personal interviews table 2 shows the sample characteristics two thirds of the informal carers in the sample were women just over half of the sample was the child of the caredfor person and 38 were the partner all others were other family members and nonkin such as friends or neighbors almost two thirds of the informal carer sample lived in the same household as the home care service user about half of the informal carer sample supported their relatives or nonkin less than 5 years of the sample 20 spent less than 10 hours per week in caregiving 40 between 10 and 50 hours 16 5099 hours and 20 more than 100 hours per week in total only one in four informal carers had taken up services for carers such as information and advice support from a carers group or shortterm care details concerning the study design data collection and extensive sample characteristics of the austrian informal carer data are provided elsewhere 19 the distribution of responses for each ascotcarer domain and the distributional statistics for the overall ascotcarer score are shown in table 3 the percentage of missing values was generally low ranging from 02 to 35 indicating a good acceptance of the german version of the ascotcarer instrument for this reason no imputation was performed when investigating itemlevel and overall validity individuals with missing values in at least one of the domains were therefore not considered in the validation of the total score they were however included in domainspecific analyses for the domains in which they had given valid answers item response distributions can also be used to assess potential floor or ceiling effects which would manifest themselves in particularly high cell counts in the highest or lowest categories generally frequencies were highest in the middle categories except for the domains of social participation and involvement and personal safety where most respondents were in the ideal state category as all domains are scaled according to a similar logic high levels of ideal state answers in those two categories are not seen as indication of a ceiling effect but rather a reflection of the respondents situations in these specific areas of life construct validity of the german ascotcarer construct validity of the overall ascotcarer score to evaluate construct validity we first examined correlations of the ascotcarer total score with related concepts significant albeit moderate correlations 29 were found for all variables with the overall ascotcarer score as expected the eq5d index qol and ces were positively correlated with ascotcarer score suggesting that better healthrelated qol overall qol and carers experience were associated with a higher ltcqol for carers zbi score was negatively correlated with the ascotcarer score which suggests as hypothesized that negative experiences of caregiving relate to low ltcqol for informal carers domainspecific construct validation of the ascotcarer table 5 summarize the results for scores of comparator outcome measures to be related to all seven ascotcarer domains state the significance and direction of the association as expected a number of instruments eq5d index ces and zbi scores were related to all ascotcarer items in general associations were significant at the 1 level for ces and zbi as well as eq5d the latter with the exception of occupation selfcare and space and time to be yourself tables 6 and7 shows the results for single items of comparator outcome measures to be related to ascotcarer domain and specific subgroups of informal carers expected to be related with the ascotcarer domains occupation as expected the eq5d item usual activities and the ces item life outside caring were significantly positively and the zbi item time for oneself negatively associated with the ascotcarer item occupation which aims to capture meaningful and enjoyable activities in addition associations between occupation and characteristics of the care setting namely challenging behavior and cognitive skills of the caredfor person and care hours were associated in the expected direction at the 5 or 1 level suggesting that challenging behavior and low cognitive skills as well as many weekly care hours were related to low qol in the domain occupation of the german ascotcarer control over daily life in line with the results of the validation for the english original 3 we found a significant positive association between the eq5d item usual activities and the ascotcarer item control over daily life as expected the zbi items stressed because of compatibility of caring and other responsibilities and feeling uncertain about service user were negatively associated with control the ces item control over caring however was not found to be positively associated we found a highly significant negative association between the control item and weekly care hours with higher care hours per week being related with lower feelings of being in control of daily life as hypothesized the eq5d item selfcare was significantly positively at the 5 level and zbi time for oneself negatively at the 1 level related to the ascotcarer selfcare domain the ascotcarer item selfcare was associated negatively with both the service users cognitive performance and challenging behavior and care hours as expected personal safety all five eq5d items were significantly positively associated with the personal safety domain also in line with the hypotheses we found significant negative associations between the ascotcarer item and both service user cognitive skills challenging behavior of the caredfor person and care hours as expected informal carers with no problems in any of the eq5ditems those whose caredfor person had no cognitive impairments or showed no challenging behavior as well as informal carers who helped less than 50 hours a week reported better personal safety social participation and involvement tables 6 and7 show that as expected the zbi item stressed because of compatibility of caring and other responsibilities as well as the number of weekly care hours were each negatively related to the ascotcarer social participation and involvement domain in line with the hypothesis the social contact variables were also found to be positively related at the 1 level and 5 level space and time to be yourself as expected we found a significant positive association between the ces item activities outside caring and the ascotcarer item space and time to be yourself negative associations were found between each of the variables and care hours while the possibility of taking breaks from caring and the ascotcarer domain space and time to be yourself were positively related feeling supported and encouraged the ascotcarer domain feeling supported and encouraged was positively associated with the ces items support from familyfriends and support from formal services we found the zbi item feeling uncertain about the person cared for to be negatively related with the ascotcarer domain feeling supported and encouraged finally the process quality variable was also significantly associated with ascotcarer feeling supported and encouraged discussion the translation and cultural adaptation according to ispor tca guidelines aimed to develop a german version of the ascotcarer instruments that has sufficient linguistic content and construct validity and can be employed in germanspeaking surveys as a measure of ltcqol of informal carers the analysis of cognitive debriefing interviews provided evidence for linguistic and content validity the interviews showed no major issues with comprehension of the german translation of ascotcarer except for the personal safety domain where the restriction to as a result of caring role was not always picked up by the informal carers therefore to ensure the understanding of the personal safety domain we recommend briefing interviewers to pay extra attention when addressing the domain and to stress the importance of the prompt included in the question in addition we found solid evidence to support convergent validity as part of construct validity of the translated german ascotcarer the ascotcarer score was significantly correlated with other measures of conceptuallyrelated constructs particularly to scales also capturing carers quality of life as to be expected the weakest association was found with the eq5d index that seeks to capture healthcare instead of longterm carerelated qol for most of the ascotcarer domains significant associations with conceptually related constructs were found except for personal safety with no corresponding alternate measure in the data and for the control over daily life domain and the ces item control over caring which seem to measure different aspects of having control the ascotcarer domain control over daily life was intended to reflect a broader concept that may also be influenced by other areas of life not only caring 34 while the ces item has a narrower more specific focus the comparison between subgroups of informal carers to explore discriminative or knowngroup validity focused on characteristics that are well supported by previous studies as expected informal carers with high care intensity or no opportunity to take a break from caring showed lower ltcqol as informal carers who cared for service users with low cognitive skills and challenging behavior while the analyses presented in this paper supported the construct validity of a culturally adapted german version of ascotcarer and may be useful as a reference for assessing the validity of ascotcarer translated to other languages there are some limitations to this study to begin with we did not match english and austrian samples of informal carers to investigate crosscultural validity as defined by cosmin study design checklist 13 second we did not investigate measurement properties that require standardized interview data at two time points as this was beyond the financial means of this project we thus encourage future research to assess these measurement properties the findings of this study provided good evidence for a culturally adapted german version of the ascotcarer instrument the cognitive debriefing interviews support its linguistic and content validity since almost all related constructs were significantly associated with the german ascotcarer and in the expected direction and since the same holds true subgroups of informal carers there is good evidence for its construct validity furthermore the analysis of qualitative as well as quantitative data comes to similar conclusions as reported for the original english ascotcarer instrument 23 and therefore support the construct validity of the german translation these findings support the use of the german ascotcarer instrument to capture ltcrelated qol for informal carers in austria and other german speaking countries and can thus be utilized for national evaluations of ltc outcomes and comparative studies research is encouraged to assess further measurement properties of the translated instrument compliance with ethical standards conflict of interest the authors declare that they have no conflicts of interest ethical approval the responsible university office at the wu vienna university of economics and business has determined that no ethics clearance was needed under university regulations informed consent all participants have provided written consent to participate in the study open access this article is licensed under a creative commons attribution 40 international license which permits use sharing adaptation distribution and reproduction in any medium or format as long as you give appropriate credit to the original author and the source provide a link to the creative commons licence and indicate if 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purpose the adult social care outcomes toolkit for carers ascotcarer developed in england measures the effects of longterm care ltc services and carer support on informal carers quality of life qol translations of the ascotcarer into other languages are useful for national and crossnational studies the aim of this paper was to report on the translation and cultural adaptation of the original english ascotcarer into german to assess its content validity and to test for its construct validity convergent and discriminativeknowngroup validity methods translation and cultural adaptation followed the ispor tca guidelines as part of the translation and adaptation process five cognitive debriefing interviews with informal carers were used for evaluating linguistic and content validity in addition a sample of 344 informal carers of older adults who received home care services in austria was used for hypothesis testing as suggested by the cosmin checklist to assess convergent and discriminativeknowngroup validity as part of construct validity results cognitive interviews provided evidence that questions and response options of the german ascotcarer were understood as intended associations between ascotcarer scoresdomains and related outcome measures convergent validity and expected groups of informal carers and the care service users they care for discriminative validity supported construct validity of the translated instrumentthe german ascotcarer instrument meets the required standards for content and construct validity which supports its usefulness for cross national studies on ltcservicerelated qoloutcomes in informal carers research is encouraged to assess further measurement properties of the translated instrumentpolicymakers have recognized the crucial role of informal carers in supporting older and frail family members friends and neighbors and have since implemented benefits to improve their status and wellbeing 1 to assess the carers situation a range of instruments 2 3 has been developed such as the carer experience scale ces 45 the adult carers quality of life questionnaire acqol 6 and the adult social care outcomes toolkit for carers ascotcarer all addressing carers quality of life the zarit burden interview 78 addressing care burden in comparison to other tools assessing carers quality of life qol ascotcarer however is the only one to have a corresponding instrument for measuring the qol of longterm care service

introduction womens empowerment is a concept that recognizes womens influence over subjective choices in their own lives thus it has a resilient basis in human rights womens empowerment builds an environment within which women can make deliberate decisions and premeditated life judgments in certain settings women form nearly half of the worlds population and womens empowerment is thus considered a crucial element in attaining the maximum level of desired development the concept of empowerment through sports and physical activity has become a tool for uniting women in their struggle against patriarchal customs regarding womens choices regarding their lives and bodies womens empowerment through physical activity is an important element for a healthy lifestyle in both developed and developing countries the existing discourses have shaped the ordinary perception of physical activity and directed the development of global and local policies for womens participation in sports and physical activities women in pakistan legally enjoy equal rights with respect to their name voting education social and political contribution and participation in physical activity however sports and physical activities are still excluded from the debates surrounding womens empowerment in pakistan the islamic holy book and the traditions of the prophet mohammed support physical activity as an important part of the development of human health good health and fitness are described as a boundless consecration in islam islam stresses the growth and preservation of bodily and mystical powers irrespective of gender differences islam openly motivates muslims to guide their offspring to learn various physical activities to make them physically strong and active the prophet muhammad said that muslims should guide their children in learning the arts of horse riding throwing arrows and swimming although physical activity is encouraged for all muslims including women womens participation in sport and physical activity is perceived to be restricted through some religious and cultural rules women in pakistan similar to those in other muslim and regional countries have stated that physical activity is incompatible with religion with the modest dress requirements and lack of segregated facilities cultural norms arranged by families and communities personal interest and economic aspects being cited as major factors influencing their participation in sports the belief of whether performing physical activity lies within the framework of islam is a major consideration islam is not against women participation in sports and physical activities as there is no provision in the quran that prevents women from partaking in sports activities as long as women fulfill the requirements in terms of modesty similarly benn et al highlight the same matter whereby the provision of equal opportunities to girls in sports needs to be harmonized with the islamic framework in terms of wearing modest dress another cultural norm that indicate is the fear of defeminization due to participation in sports activities women are strongly influenced by the practices of cultural preservation nurtured through socialization and therefore women avoid being involved in sports and physical activities this could be a result of beliefs among societies that women will become physically stronger and perhaps take on masculine characteristics in society the defeminization of women as a result of entering maledominated public spheres may be perceived as a challenge to social norms that try to limit the role of women it is impossible for women in pakistan to participate in national and international events if they do not learn and develop the skills required to play their sports of interest thus the exclusion of women from public domains may decrease their ability to select a career as an athlete violating the human right of women to participate in physical activity at national and international sports competitions this study is a part of our project examining womens empowerment in pakistan on the basis of their lived experiences and focuses on how young women in pakistan are empowering and disempowering themselves with respect to physical activities these young women in islam studied physical education and sports at one public university located in the southern punjab region of pakistan we refer to these women as change agents as most of these young women were the first in their families and one of few in their communities to participate in physical activities and to leave their homes for sporting activities these women as change agents are founding a path for other women in their families and communities and creating opposition to the cultural and religious norms present in their families and communities this study discusses the need to analyze the issues aiming to empower women in their specific cultural and social contexts intertwined with religion and culture in light of feminism in sports theory this confronts the linear narrative of empowerment through physical activities by signifying the ways in which physical activities can construct new gender relations that can immediately empower and constrain women in different contexts furthermore our study problematizes these narratives by underlining how certain relations and factors shape young womens actions and relationships together with their attentions inspirations and goals to live a life of their own choice which can have international implications in the context of women participation in sports research design this study emerged from our project on young womens empowerment in pakistan focusing on womens perceptions about physical activities for a healthy lifestyle and their lived experiences of participation in physical activities similar to other studies on womens experiences in physical activities in pakistan we adopted qualitative exploratory and inductive methods to collect the data the collected data were analyzed using a thematic analysis approach first codes were created that correspond with main themes and after refinement of the themes a report was produced to assess the situation of sports participation of female pakistani students qualitative results are provided in the current study qualitative studies are the best way of understanding and explaining an interviewees statements about his or her specific past attitudes and experiences similar to other studies on womens experience in sports and in pakistani society we conducted semistructured and informantstyle interviews the participants were interviewed in panjabi and the interviews were translated into english the participants were enrolled in a 2year masters programmsc physical education sports sciences all of the program faculty were male reflecting the gender inequality in pakistans sports and higher education settings however the research mainly focused on the young womens experiences of playing sports and participating in physical activities before enrolling in this program which means that this research does not include the young womens experiences of learning and playing sports at university background information of participants the participants were between the ages of 20 and 25 and were from bahawalpur multan bahawalnagar and rahim yar khan located in the sp region most districts in the sp region have minimal empowerment of women with a large disparity between urban and rural populations in the selected dimensions of education independence and housing services one or both of each participants parents was educated and had attended university to a bachelors or masters level and this was an important factor in encouraging them to enter higher education and choose a maledominated major most of these young women selected physical education mainly because of the support they received from their parents however some of the young women were subjected to great pressure and faced a large number of obstacles in getting their parents to agree with their choice of major in higher education physical education had previously been considered to be and described as a maleonly profession for most of these young women until they chose to change this patriarchal structure sampling eighteen young female students from one public sector university located in the southern punjab region of pakistan participated in this study these young women were enrolled in the masters program in physical education and we denoted them as change agents in contemporary pakistani society because many of them were the first among their families and societies to select physical education as their major the authors approached the respondents by means of an official procedure first contacting the heads of departments then reaching out to the participants with the help of snowball sampling all participants gave their informed consent in written form prior to their participation in the study the study was conducted in accordance with the declaration of helsinki and the protocol was approved by the ethics committee of the college of physical education hubei normal university we fully complied with all relevant ethical considerations we elicited the narrative of their personal experiences of empowerment before and after enrolling in the program explored what factors supported and constrained their choice what aspects of society these young women considered had empowered them to enter into a maledominated arena and how these women were setting examples for other young women in a patriarchal society with respect to the local cultural and religious values the second author a female academic and feminist working on several projects for training young women contacted the participants and conducted interviews throughout this study ethical considerations were followed with respect to the participants privacy and the confidentiality of the research data all participants were informed about the aims of the study before the interview and that the anonymity of their identity including their affiliation would be assured the participants were provided with a further explanation about the scope of this study at the time of the interviews participants signed a written informed consent form to verify their voluntary participation in this study the contents of the questions were sent to the participants ahead of the interviews but were explained again before the formal setting of the interview data analysis for data analysis we employed threestage systematic data analysis to summarize the responses of the young women who participated in this study by following the guidelines of saldaña for systematic data analysis in this approach we first developed a detailed familiarity with the data through repeated readings of each interview transcript in the first stage we divided all transcribed data into open codes after examining the similarities and differences among the reflections provided by the young women in the second stage these open codes were further divided into meaningful categories to distinguish their relationships and properties in the final stage we developed particular themes in which the initial codes and meaningful categories were unified around essential categories this approach to developing the specific themes over three stages helped us stay close to the participants meanings as the codes are short symbolic indications that capture the spirit of the transcriptions this strategy facilitated a better understanding of the young womens perceptions and priorities and it enabled us to remain open to the amazing aspects of their lived experiences findings the choice to play sports for young women in this study and to select it as a learning major at university involved shared concerns related to their interest in sports all participants were the first women among their families to select sports and physical education as learning majors at university in contrast most of these young women were firstgeneration students in higher education the responses from the participants produced several common themes that had enabled them to enter into the maledominated spaces of sports and physical education the lived experiences of these young women before and after entering these patriarchal spaces could yield amazing outcomes for nextgeneration women in their own families and their communities change agents incorporation and resistance this section emerged from the denials and challenges the participants confronted when attempting to achieve their desire to play sports different practices of resistance and adaptation helped the participants to position themselves by drawing on dominant social discourses and rejecting the social pressure presented by families and communities in this regard p1 shared her story as follows my aunt advises me to stop playing sport as this field has many issues for girl players but in spite of her advice i cannot leave this field due to my immense interest in it my father has also asked me a few times to leave this field but i did not do this p5 said my family allowed it at bachelors level due to there being a female institution but after the completion of my bachelors studies my father would not permit me to continue these sport my father advised me earlier my dear these sport are not your future you should focus on your academic studies only so i agreed with my father and almost left sports moreover our society also does not like girls participating in sports p17 stated my father did not want me to join this area of study he had the desire for me to join some other field as my father does not like sport and races but on my insistence he agreed to my joining this field of studies likewise participants also disclosed the behaviors whereby others in social and academic domains sought to position them and that they were often considered to be powerless the majority of the young women who participated in this study were firstgeneration women in sports and a few were firstgeneration women in higher education these young women broke social barriers by selecting physical education and sports as a learning major for their masters degrees the decision to choose these major raised shared reflections among the young women as they all required permission from their family to make this choice for some it was easy to decide due to having their parents support but it was difficult for others not primarily because of their parents but due to other family members and society even if parents were supportive of the young women they still had to deal with different patriarchal claims made by different people among their own families and communities thoughts of p9 and p15s were somehow similar they believed my family has no issue with my sports activities however my relatives object to my sports activities they say that it is indecent for girls to do jumps and run races some of the statements these women and their parents were confronted with addressed issues such as different roles for women as a child and as a grownup dressing longdistance and traveling issues laughing and shouting at women on public grounds that the feminine body is inappropriate for sports that sports are a male profession and the male dominance in the faculty three interrelated themes were selected to explore the issues of womens empowerment in sports for young women resisting gender stereotypes adjusting social beliefs and rejecting social norms these themes are used to reflect the victories and frustrations of our participants in implement them as strategies to achieve their goals resisting gender stereotypes developing interest and departure the majority of the young women who participated in this research grew up in small cities where they had played on the streets in their childhood with other male and female friends from their neighborhoods they were engaged in regional childhood sport that were famous among children in pakistan like other countries such as hopscotch rope skipping barf pani hide and seek oonch neech pitho garam and paper games as p8 shared about her childhood i have loved playing sport since my childhood it was so much fun playing sport with my friends and cousins we played inside our homes on roofs inside rooms and outside p12 said i developed my interest in sports during my early years of life i was very good at physical activities because most of my childhood sport included running jumping and throwing similar to p8 and p12 other young women shared similar memories of their childhood and how active and happy they were in their childhood however they experienced a change in their daily life activities at home and school as they grew up at home social norms that required grownup women to stay indoors after school became dominant while at school certain notions of the intelligent student were dominant referring to those who focused more on books and got good grades in tests as p7 mentioned when girls are children they are permitted to play whatever they want but when they grow up they are asked to leave sport p5 said i was active in physical activities when i was a child i stopped playing sports from grade 6 due to several factors lack of time due to school studies homework at home and social and family pressure i started playing again in college during my bachelors degree p11 believed that with age society has made it a social norm for girls to stay home and not play sports especially outside similarly p9 said i was very active in sporting activities at primary school but later i left sports because i was told that sports are not for women and there is no career for women in sports i occasionally practiced at home in my free time therefore the opportunities for young women to play sports were minimized as they grew up like p11 and p9 participants identified that sports and physical activities were not suitable for women because the profession is not considered feminine in pakistani society participants reflections highlighted cultural norms that consider women to be fragile commodities inappropriate for being subjected to hardship and laborious jobs additionally these norms include traditional expectations that women behave in a ladylike fashion which means wearing dresses maintaining a beautiful and delicate body being moral and pure and raising children when they are grown adults therefore very little attention is paid to womens physical activities in schools and at home furthermore these reflections also support the notion that physical activity is not only for a professional career but is important for a healthy and active body dealing with dominant discourses give and take to achieve change in families and communities participants consistently perceived that a give and take strategy was necessary with respect to conforming to the dominant discourses the give and take strategy was regarded as the dominant structure of knowledge and beliefs that encourages and allows a particular set of practices while discouraging and restricting the values of other practices participants often used this strategy by calculating the apparent costs and benefits of agreeing to social norms however dealing with dominant discourses by agreeing to social norms in terms of giving in order to achieve social and individual benefits is never simple participants regularly felt a high degree of pressure to follow or incorporate the major social norms additionally the knowledge and beliefs presented as dominant discourses were not fixed transparent or gender neutral this implies that participating in sports was not accessible to all on equal terms participants frequently discussed the uncomfortable and strange experiences of adapting to social norms and behaviors and remained torn between conflicting social and ideological pressures therefore participants often had to adapt to or assimilate social and family rules in order to achieve their own personal goals as p1 said in order to play sports and continue my studies i had to understand the rules of my family and society i was good at sports but there was huge social pressure to leave sports because i am a woman even though my parents were supportive i was not allowed to study in higher secondary school because many relatives were against women going for higher education and women playing sports due to relatives and community but i did not give up i studied at home appeared at the exams as a private candidate and passed them with good grades these two years gave me the strength to fight for my rights in these two years i kept encouraging myself and saying to my parents that i would go to college if i passed the higher secondary exams p1 built her position by completing her higher secondary education which is necessary to enter higher education even though she had to miss 2 years of her life at higher secondary school she preserved firm control over her desire to play sports and achieve progress in her studies and career in sports she observed great pressure from her relatives and community for her to stop playing sports and stop her studies this is highly challenging for young women in families and communities with certain patriarchal beliefs however it appeared to be implicitly agreed among the participants that this was the only potential way for young women to deal with certain situations dominated by masculine norms and values this strategy was considered necessary to make changes within a severely gendered system additionally as reflected by p1 social and cultural beliefs and values are a determining factor for women to respond and react in their life such position can also be beneficial for women as these experiences can help women reevaluate their norms and values like asmap1 asiap2 shared a similar situation to that of p1 as her uncle and aunt were against her playing sports however in response to her constant efforts to talk to her uncle and aunt about sports they put certain conditions on her playing sports sometimes it is necessary to understand the situation and follow give and take my uncle and aunt were against my participation in sports after finishing my bachelors degree i told them again that i wanted to select sports and physical education for my masters degree they agreed on one condition that i would have to wait for one year they put this condition because their daughter was studying in her second year and she would start university next year i think they thought it would be safe for us to go to university together p2s experience of showing the flexibility of waiting for one year to achieve her goals reflects the strong motivation to maintain her position in a predominantly patriarchal society however in this situation it could be argued which rules can be flexible and to what extent as well as to what degree women can accept the belief that women are incapable of working in maledominated settings in the context of this flexible system with patriarchal principles while p2 showed flexibility in accepting the condition of waiting for one year her struggle in dealing with the dominant discourse has not finished yet having gained admission she is required to go and return from university with her cousin however there are significant time differences between their classes as well as the schedules for sports training and sports competitions she often tries to negotiate with her teachers and trainers regarding the possibility of leaving early some of her teachers are supportive and understand her situation but it is difficult for her to skip training and sports competitions this situation is similar to that of many other participants who had agreed to cooperate with many social norms among many others not playing in public places and not playing sports with men were major requirements that these young women had accepted in order to be able to play sports inside the campus p3 said i cannot go to public playgrounds like many other girls because boys mostly occupy public playgrounds and my parents do not like it if we play in playgrounds it is fine for me because i can play inside the campus similar to p3 p15 said there are no separate playgrounds for girls in communities or universities i often played in the park with my other female friends when i was in school but many members of society complained to my father about our playing on public grounds my father asked me to stop playing in the park but i could play inside my school i still follow this now i play inside the university but do not play in public playgrounds in addition to the strategies for facing challenges at home and in society participants revealed several challenges within their current physical education program and sport sciences even though we were not focusing on recording participants experiences of learning sports and physical education in their current program participants frequently shared their personal and collective experiences of playing and learning sports in a maledominated academic field as discussed earlier all fulltime faculty in the department of sports and physical education were males these reflections were mixed with respect to the participants expectations from the program the opportunities the difficulties of playing sports with other male students and the difficulties of training with their male teachers as p15 shared her personal experience this program is very good and all teachers are very supportive but there is still a gap between us even though i am very outspoken i cannot share my things with teachers similar to p15 p17 shared a similar experience of playing sports with males and selecting it as a profession before enrolling in this program i knew there were no female teachers in our department but i prepared myself for this however it was not as expected it would be on my first outdoor sports training i had a period i was in big pain but i could not tell my teacher about my situation it was a very painful experience because it is impossible to share such things with others especially males rejecting social norms a common theme surrounding women playing sports is that the women are resisting commonly believed notions of inferiority in sports and physical activities sports participation helps women realize that they are free from patriarchal demarcations and control and develop a sense of selfrespect for their physical abilities many participants showed firm resistance by developing coping strategies when they felt marginalized these strategies included rejection and refutation of the ideas imposed on them without their own choice and which they regarded to be unimportant strange discriminatory or even offensive as p9 said sports and physical activities are sport but they are completely disciplined i get the awareness of the outside world through playing sports i come to know how to present myself in front of this world as a player i can feel i am powerful not only physically but also mentally p9s reflection demonstrates that sports and physical activities provide mental and physical strength to women which is necessary to live a healthy life and face patriarchal behaviors similar to this p13 shared her experience my family was not against my sports participation but they were against studying this subject as an academic major but i told them i would choose this major only some of my relatives said it is indecent for girls to do jumps and run races i told them women are similar to men and we can do everything that men can do similar to this p3 said our society does not like girls dressing like boys and people do not like girls wearing tracksuits and short trousers to play sports i have been criticized for wearing sports trousers i rejected these notions because they are socially constructed ideas these reflections from p13 and p3 show resistance to peoples patriarchal beliefs within families and communities both young women desired to build careers in sports which was rare in their families and communities additionally these young women suggested that girls should go out and break the barriers of the limited spaces available outside for girls to play and practice this would create a sense of strength among women and create awareness that women are equal community citizens p14 shared similar thoughts that women are equal citizens by law and that there is no restriction on women playing in public playgrounds by law however there is a lack of awareness and a sense of danger among women that limits their chances of going out and playing in public spaces she said playing sports is good for me because it helped me overcome my shyness and develop confidence i had to resist some social norms if i wanted to play sports i opposed decisions on my sports participation and i challenged many social norms that people believed against womens participation in sports sports have made my behavior positive and constructive similar to these young women p8 shared her experience of resistance from another perspective sports have taught me to fight and keep fighting till i win the game despite staying at home and earning money by teaching which many of my former classmates are doing i decided to join this program many people often ask me why i selected sports for my masters degree i ask them why they didnt raising an empowered generation important elements parents and family in addition to norms suggesting different roles for women in society the major source of inspiration that encouraged most of these young women to maintain their personal interest in playing sports was their parents along with other family members there was unconditional support from parents siblings cousins and other relatives for the majority of these young women to participate in sports and physical activities this is consistent with previous studies discussing the significant role of parents in providing the various opportunities and resources for their children that are required to cultivate their childrens sport development as p16 said my parents were very supportive in playing sports they always supported me in playing sports even though i did not get many chances to play in my school years they supported me when i told them i would choose physical education for my masters studies p2 reported my parents especially my mom was very supportive of my choices in my life my house is far from the university and we have evening competitions my mom arranged a pickanddrop service for me many of my relatives do not like it when i play sports or go back home late but my mom always motivates me to do well in sports and does not pay attention to what people say p8 said my parents and my three elder brothers supported me a lot my brothers were very active in sports in their college years one of my brothers is the principal of the primary school he always encouraged me to play sports and play sports well he always tells me i have to make our family proud of my sports success despite these amazing stories some participants noticed that several family members were against their participation in sports in addition these young women had to sacrifice some of their individual choices especially during their school years however as these young women grew up they encouraged themselves to overcome the barriers and ignore the voices aiming to reduce their chances of achieving their goals p4 lives far from the university campus and she arranged a pickanddrop service for herself however she always faced criticism from people in her neighborhood and her brother who was against her going out alone and participating in sports she said pick and drop was a major issue for me like many other girls around here i had to go to playgrounds for practice classes and competitions at different times sometimes early in the morning and sometimes in the evening i arranged a pickanddrop service for myself but my brother is unwilling for me to travel alone even though he knows that i go alone he still would not give me pick and drop p4s reflection provides a great example of how she supports herself to overcome the traveling problems and faces the pressure from her brother regarding her traveling alone her parents and other family members including her female cousins encouraged her to play sports despite her brother her female cousin who was active in sports in higher secondary school had participated in many regional badminton competitions however unfortunately she left sports after finishing higher secondary school due to social and family issues and never participated in any competitions during college and university p4s cousin always encouraged her to pursue her career in sports if she was good at sports thus as p4 said the fact that no one can stop her from playing sport acts as a symbol of liberation for women in society nevertheless p2 faced a similar situation but more complicated than p4 p2 had been an active participant in sports but the unexpected death of her father when she was in high school changed the whole path of life for her after her fathers death her mother decided to move into her uncles home together with her other siblings her mother and other siblings were always supportive of her participation in sports however her uncle was against women playing sports and did not permit her to compete in any competitions she explained her situation as follows i have been good at sports since my childhood my parents always supported me and i always wanted to participate in national competitions and make my parents proud but my fathers sudden death changed everything for me my dreams plans aspirations all changed it was difficult for my mom to raise all of the children alone so she moved to my uncles home i had chances to apply for provincial interschool sport but my uncle refused in my higher secondary school i convinced my mom uncle and aunt to allow me once only once to participate in the trial for national sport selection they allowed me one week before the trials and i was the only girl selected from among 40 girls throughout the district but my uncle and aunt did not give their permission to go to islamabad to participate in a sports competition p2s story reflects the fact that her family may have sense that their social respectability would be endangered if she traveled alone to participate in sports this reflects the position of women in pakistani patriarchal society where traveling can never be done easily by women compared to men and previous studies have constantly reported the issues faced by women traveling in pakistani society women as role models women role models in sports and physical activities are considered essential for the inclusion of women in the sports field these women role models have smoothed the way for generations of female players all over the world struggling to overcome physical social financial and political hurdles women role models help to increase the involvement of girls in sports activities their role and character constantly produced and presented by the mass media build dreams for people and make the world more energetic and interesting they provide the necessary components to guide individuals with respect to the attitudes and appropriate ways of behaving during the socialization process similar to this several participants mentioned that different athletes especially women from pakistan and other islamic countries had affected them by offering courage and hope p2 said i am impressed by the life of maria toorapkai whenever i face troubles in life the difficulties i had faced in the past and the struggles i face at present i always encourage myself by saying i must do it as maria did it p2s reflection on the meaningful importance of maria toorapkai in her life provides significant evidence that womens struggle for empowerment has a great impact on other women in society as well as future generations maria toorapkai lived her childhood disguised as a boy and played sports with boys in her hometown north waziristan previously controlled by the taliban her participation in sports disguised as a boy winning competitions by beating boys playing sports by wearing manlike dresses and her representation of pakistan in international sports are elements that not only gave her a great reputation in pakistan but put her life in danger as well however her story of following her dreams pursuing sports and defying death threats has transformed her into a true inspiration for other women in pakistan as in the case of p2 similarly other participants also shared the effects of role models in their life for becoming change agents p11 said i am inspired by sania mirza she is not only an excellent tennis player but also a great inspiration for young women like me p14 said i get inspiration from all women who play at the national and international level from all countries i often watch womens sports on tv and i wish we could have our own womens team in every sport just like cricket in addition to national and international stars many participants mentioned the names of people who were around them and had helped them at every step to become change agents these included family members teachers friends and selfmotivation conclusion and implications this study explored the experiences of young women regarding their participation in sports and physical activities it investigated tasks aiming to empower women in specific cultural and social contexts in the region in pakistan in which women are least empowered by using feminism in sports theory for this purpose 18 young women undertaking a masters in physical activities and sports were enrolled in this study and shared their lived experiences of sports participation these young women who we refer to as change agents were the first generation of women in their families to have selected physical activities and sports as learning disciplines and in some cases were the first generation among their families to enroll in higher education in examining these young womens regular practices as change agents the study highlighted how they confronted the visible gender inequalities that affected them and employed different strategies to empower themselves to change this patriarchal structure focusing on the interviews the young women reported having to confront gender stereotypes within their families and communities a second practice reported by participants was the strategy of compromising on a few issues in order to achieve their goals and complete their mission of participating in sports and physical activities the majority of the participants reported avoiding playing sports in public spaces because of social attitudes toward women and the limited availability of womenonly spaces similar to previous studies however a key factor in their success as change agents was the support of their parents in achieving their targets and the effect of the lived experiences of other female athletes similar to these young women these findings are similar to those reported in previous studies in the pakistani context as well as other world regions the young women who participated in this study had practiced further strategies for change they resisted negotiated incorporated or completely rejected social norms and their associated discourses in order to accomplish their priorities and desires through resistance to a series of gender stereotypes during different stages of adolescence they aimed to construct substitute methods of subjectivity as an alternative to the reality of womens behavior being controlled however the participants employed different resistance strategies with some incorporating some of the dominant discourses through a give and take strategy which was articulated as being an uncomfortable situation by several participants the situations confronted by these young women reflected the typical attitude of society which disapproves of womens freedom possibly because it is assumed to threaten male dominance the findings are similar to this reported in previous studies on women in pakistan personal resilience and desire to excel were reported as empowering factors for pakistani women the lived experiences of the young women to become change agents as explained above have several implications for internal and external policy domains at the local and national levels any new policies or development models aimed at empowering women to play sports and participate in physical activities against patriarchal norms and creating resistance toward traditional concepts of physically active women should consider the lived experiences of young women and involve the multiple forms of agencies that these young women have developed policymakers need to consider the attitudes of family and other people in communities toward or against women playing sports and participating in physical activities especially in public places therefore strategies and structures should be formulated to provide equal rights for young women to play sports in maleoccupied public places policies and development models supporting the representation of women athletes will help to direct the chances of emergence of different hierarchies resulting from womens participation in sports and the complexities of their everyday lives additionally university administrations must understand the complex realities of pakistani patriarchal society and strive to provide better facilities that encourage young women to play sports and learn physical activities apart from these there is an urgent need to create awareness among people societies and schools of the importance and possible benefits of sports to women therefore a sporting and physical activity framework with equal participation from women is essential to revive the sports culture these policies and frameworks can build a conducive environment that maximizes womens involvement in sports and physical activities the research findings represented the personal experiences of participation in sports and physical activities of the 18 participants from different regions in the south of punjab a limitation of the current study is that the sample size may not represent women nationwide moreover this research did not precisely focus on participants experience playing sports at a university with a maleonly faculty however these indepth interviews with the young women on their lived experiences of participation in sports and physical activities before enrolling in university also provide sufficient new knowledge and call for more future research on womens participation in sports and physical activities as well as identifying new change agents in different regions of pakistan this research further identifies that there is abundant space for both qualitative and quantitative research focusing on the impact of sports and physical activities on womens empowerment and the experience of women working in sports and physical activities in addition future research focused on the individual and collective experiences of young women playing and learning sports and physical activities in specific academic majors would be of great value data availability statement the raw data supporting the conclusions of this article will be made available by the authors without undue reservation ethics statement the study was conducted according to the guidelines of the declaration of helsinki and approved by the institutional review board of hubei normal university the patientsparticipants provided their written informed consent to participate in this study conflict of interest the authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest

womens empowerment is a concept describing the promotion of women doing things independently and in their own interests being more conducive to their future and physical and mental development this includes participation in different outdoor activities including sports this qualitative study presents data collected from 18 young female students at sports and physical education universities in southern punjab sp in pakistan selected using a snowball sampling technique the current study explores their gendered and lived experiences of playing sports and engaging in physical activities in patriarchal systems by emphasizing the concept of womens empowerment in the context of feminism in sports theory the findings suggest that the participants faced typical gender stereotypes in their families and communities which position sports and physical activities as being not feminine the chances for women to participate in sports and physical activities decrease as they grow up however the participants used a range of strategies to advance their interests and academic careers in sports and physical activities by resisting and incorporating dominant discourses of womens participation in sports and physical activities which also has implications in the internal and external policy domains at the local and national levels the participants displayed great resilience and optimism empowering them to enter the maledominated domains and thus we labeled them as change agents

introduction school is one of the most important environments for children and young people we also know that there is a connection between education and perceived health 1 most students report good health but the number of students reporting mental illness is increasing as is the number of students who cannot reach their school goals 2 a systematic review of research on the relationship among health learning and mental illness by gustafsson et al 1 pointed out several factors related to school performance where school failure and lack of social support were important factors however there is less knowledge about the relationship between adolescent adjustments and the role of family involvement in students school attendance the present study focuses on students tardiness within the social and cultural context at school and within families that is tardiness can be understood as maladjustment related to various negative effects on academic results and social relations 34 adolescent adjustment includes attitudes behaviors cognitiveand social aspects specifically when it comes to the students abilities to adapt within the school environment 56 the students adjustment describes the extent to which the student is committed to the school and accepted in the social milieu 5 previous research has found positive relations between a high degree of school adjustment and the results in school and social relations within school 37 regarding adjustment scholars have pinpointed the importance of the family 8 9 10 parenting characterized by the use of reasoning and warmth can contribute as a protective factor when it comes to adolescent adjustment 710 support from parents is associated with better results in school 8 in previous research tardiness has been understood as the expression of risk for future problematic behavior that could lead to absenteeism school dropout exclusion and later health problems 11 we will examine tardiness in relation to a broader framework based on a socialecological perspective 12 meaning that the physical social and cultural dimensions of students health evolve in a complex interaction among the environment organizations and individuals the socialecological theory also appears in the action area of ottawas charter 13 where to build a supportive environment for health is described as actions that offer people protection from threats to health and enable people to expand their capabilities and develop selfreliance in health they encompass where people live their local community their homes where they work and play including peoples access to resources for health and opportunities for empowerment this action area has been a platform for the development of healthy cities schools neighborhoods and other settings for daily life and activities 1415 scholars have found that to be successful as a healthpromoting school collaboration eg with the local community and parents is crucial 16 17 18 hence we focus not on the specific individual student and hisher behavior but rather on the interaction among students families and school staff from a socialecological theory perspective related to the school and to the implications useful for developing a supportive environment for students health and learning absenteeism many factors influence student achievement directly and indirectly students who are absent from school are a major problem in sweden 19 and in many other countries 2021 swedish headmasters reported that during 2015 17 per mille of all students in grades 1 to 9 were reported absent for a month or more but 185 per mille were reported as being absent now and then pisa reported that nine percent of respondents aged 15 said they had skipped school one day or more over the last two weeks 22 the definitions of absenteeism or truancy are not consistent kearny 23 suggested the term school refusal behavior as an umbrella that covers constructs related to children not going to or coming late to school he illustrated this as a continuum of truancy going from school attendance under duress and pleas for nonattendance to complete absence from school for an extended period of time 24 p 60 the third step along this continuum is tardiness in the morning followed by attendance however kearny meant that a student could move along the continuum and for example go from tardiness in the morning to complete absence or to school attendance under duress truancy includes all students that have successfully missed school and those who tried to miss school but had not yet reached their goal 23 truancy must be understood as the complex result of different structural systems around the child the family and the school 25 it begins when the child is young often in primary school and it causes harm especially to the truants themselves moreover it is costly reid 25 also found that parents and students realized the problem caused by the school environment and that teachers believe that parents attitudes and the home environment were more influential in their study heyne et al 26 differentiate between truancy school refusal school withdrawal and school exclusion tr captures the problem of a child who does not want to go to school lacks motivation and has a negative attitude but does not include late arrival sr differs from tr whereby the child wants to go to school but finds it too difficult and this category might include a late arrival while sw is related to parents versus schoolbased reasons however heyne and colleagues differing from reids findings found that late arrival or missing school is not concealed from the parents 26 based on kearnys continuum one should pay attention to tardiness as an imaginary part of a behavior that can develop into school absenteeism which in turn increases the risk of dropping out 11 school failure longlasting associations with crime and problematic health behavior 27 specific on tardiness tardiness is not a new phenomenon nor is it a problem limited to students at school tardiness or lateness to work has been considered a facet of undisciplined behavior related to maturity or motivation eg by edralin 28 on the other hand the use of flexible work time has become more common and this opportunity for employees appears to reduce lateness behavior 29 previous studies on tardiness at school are limited although it has been a research topic since 1930 eg lockwood 30 more recent studies carried out nearly 75 years later by gottfried 31 in the us show that tardiness is a risk for school achievement in math and reading not only for individual students but also for their classroom peers in addition students who arrive late to the classroom pose a risk for others being tardy in a study of 250 junior high school students gottfried 31 found that on average boys were tardy more frequently than girls but that half the students in the school had no incidence of tardiness fifteenyearold students from oecd member countries were asked about truancy and late arrival at school 22 the average percentage of students in oecd countries being late once or twice during the last two weeks was 29 percent the average percentage of students being late more than five times during the last two weeks was 73 percent the average percentage of students who are never late was 55 percent never arriving late was at a lower level in sweden as reported by 455 percent of the students and 326 percent reported late arrival once or twice during the last two weeks punctuality was best in japan and korea where between 80 and 90 percent reported that they never arrive late 22 p 304 girls and boys are reported in the same group in the midfifties damico 32 published an article about teachers perspectives on and treatment of tardiness he found that the way teachers handled tardiness varied some administered punishments others took no action the strategies were sorted into two categories laissezfaire or punitive contemporary studies on tardiness interventions at school are in line with damicos two main perspectives reduce negative behavior or strengthen positive behavior to strengthen a positive behavior in order to arrive on time at school freeman et al 33 found evidence in their review of skills training and family support but also of incentivetraining where students earned points for both attending class and arriving to class on time earned points could be used for movie tickets school supplies and restaurants 34 other examples include an intervention through which a us high school has a delayed start time according to thacher and onyper 35 ugwuegbulam and naheed ibrahim 36 relate that punishment is a common strategy to reduce lateness behavior among students in nigeria however they decided to change this behavior by using a fun perspective by introducing a game they played with students who came late to school four times or more within an observation time of two weeks the game was presented in a welcoming manner good friends this group is ours it belongs to us we are here to play a game in a purely friendly manner as we play the game we discuss our discussion which will be on lateness to school issues should be within us that is what we discuss here should be confidential 36 p 143 the game method has not yet been evaluated but this is an example of teachers trying to develop new strategies to motivate students to be on time to reduce negative behavior tyre et al 37 implemented the start on time programme including different kinds of punishments in four steps and levels the first step is sending parents a postcard about a student being late the second is the student having no lunch if heshe is late again the third involves activities such as cleaning desks and vacuuming carpets and the final step reached if a student is tardy more than 12 times involves a conference with a parent or guardian and the student is required to meet with a panel of tribal elders regarding his or her attendance the evaluation shows that compared to the average per day and per month prior to implementation there was a 67 percent decrease in average daily tardiness rates the swedish school system the swedish school system involves one mandatory preschool year followed by nine years of compulsory school or until the child is 15 years old the assignment to the schools from the government is to effect compensatory work 38 this means that schools are responsible for providing equal access to education and for compensating for differences in the students capacity it also means that the entire school system shall minimize the negative effects ofstudents backgrounds on achievement and give them an equal opportunity to learn 3940 the swedish school organization is responsible for creating a good learning environment for students personal development and the development of their knowledge 38 this includes promoting efforts and projects to increase students attendance and thereby minimize absence in education it requires systematic work based on a regular review of their own organization and content based on knowledge of the factors that promote student learning and development the efforts must include all students how the schools working environment is designed can in itself promote presence or contribute to absence a good learning environment with teaching adapted to the individual students needs promotes motivation to participate in education the participation of students in the work of promoting presence can be effected in many different ways they must participate in the work of creating a common approach to late arrival and determine what will be considered an invalid absence 3839 in summary we have discovered that there is a gap in research in regard to studies about tardiness in school even though it is well known that early identification of student tardiness increases the opportunities of detecting and preventing a problematic behavior that could eventually lead to absenteeism school dropout exclusion and later health problems 3 in addition there is a lack of research on how absence andor tardiness among students effects education and the work environment for the other students and the teachers and vice versa 41 for example tardiness is often explained in relation to individual behavior such as childrens sleeping behavior 42 and is seldom related to a school context we argue that tardiness is overlooked in research and practical work related to health promotion in school moreover we claim that tardiness as a phenomenon is overlooked in terms of a socialecological perspective on health 43 and a critical perspective on health promotion 4445 it is crucial to include perspectives on who is most affected the student however most research in this field appears to be based on statistical analyses of absenteeism 1946 thus there is a research gap in regard to including the students own perspective on attendance absence and tardiness as well as a lack of studies that include stories of those who are part of the social setting of students at risk of absenteeism given this background the goal of the present study is to contribute knowledge about tardiness that can be useful in strengthening practical work at school from a health promotion perspective its aim is to analyze students school staffs and parents views on students tardiness materials and methods to study students school staffs and parents views on students tardiness a focus group interview design was chosen to this end we created groups of participants and provided instructions regarding discussion themes 47 48 49 examples of interview questions to parents and teachers include what do you think promotes students school attendance and how do you perceive the responsibility of the school in relation to students school attendance to the students does it ever happen that you arrive late to school and when does it feel good to come to school two researchers participated in each interview one led the discussion while the other handled the audio recorder took notes and observed 50 participants and procedures this study took place from january to june 2017 in a midsized town in the northern part of sweden the schools were located in a suburban area primarily comprising middleincome households the participating schools were both compulsory schools from the age of six swedish children are allowed to start primary school and most of them do so from seven to fifteen years of age school is compulsory the first school with approximately 200 pupils went from primary class to grade 5 the second school with approximately 350 pupils included grades 6 to 9 the headmaster at the school with the younger children selected nine school staff members who participated in a focus group lasting one hour at the school for students in grades 6 to 9 the research group introduced themselves to the staff presented the study and asked for volunteers for the focus groups staff were also given an information letter and a list was left in the staff room so they could sign up for the focus group a total of twelve school staff members accepted the invitation they were divided into two groups one with the school health team and one with teachers all parents at school b were invited by email and three of them accepted one of them was prevented from participating so the interview was carried out with two parents based on swedish ethical law teenagers aged 15 are mature enough to decide on being research participants 51 therefore only students of that age were invited to participate in the study this was also decided because students in grade nine have the most years of school experience one of the authors introduced the study to the students in class and asked for participants the author also spoke with the students about the study during breaks and reminded them of the study and invitation twentyone students in grade nine accepted the invitation mindful of wernersson and ves 52 finding that boys tend to dominate girls in groups and of the overrepresentation of boys who wanted to participate we generated two singlesex groups and one mixed group the students decided on their own if they wanted to be in the singlesex or mixed group group 1 included nine boys group 2 included five girls and group 3 was a mixed group all interviews except one were held during the day in a separate room in the school building the parents were interviewed in the evening in the school library the two focus groups with teachers lasted from 60 to 90 min the focus group with the school health team lasted 60 min and the focus group with the parents and pupils lasted 30 to 40 min all interviews were audiorecorded and transcribed verbatim by an independent transcriber analysis the material was analyzed in order to determine which themes best describe the content by using a process inspired by braun and clarke 53 in the analysis all transcripts were initially read by three of the authors independently based on these readings themes describing underlying aspects of the stories told were constructed that is specific parts of the transcripts were highlighted and grouped as the analysis was conducted during this process delimitations were constantly discussed and challenged in the research group the researchers also noted down their thoughts and interpretations while reading the material the themes were carefully reviewed several times before arriving at a result one overarching theme and three subthemes are the focus of the reported results these subthemes are not mutually exclusive rather the subthemes overlap as one leads to the other together they tell a story about students staffs and parents views on tardiness the themes should be viewed as representing patterns of shared meaning throughout the interview transcripts the original spoken language in the interviews was swedish at the end of the analysis process the results including quotations were translated into english research ethics at the outset all participants were given oral and written information about the project and were informed of their right to withdraw at any time without explanation or negative consequences all participants signed an informed consent the regional ethical review board in umeå sweden found that the study was not covered by the ethical review act and did not consider the study as an issue of ethical concern results we began our study with the concept of being present in or attending school and class during an interview with two parents both mothers the importance of students being on time for school and class were emphasized the parents viewed school attendance from a broad perspective and on various levels that is punctuality was understood as a skill for future life and a way to be respectful to others however they also found that students must bring books bags and other items with them in addition to being on time for their lessons yes that they are in place at the lessons and on breaks and lunches too of course so they are in place on school days thats what i think yes that they are on time and are here when they should be yes and have what they need to bring to school like books clothes for physical education bags or whatever it is the parents statements on students arriving on time collected at the beginning of the study inspired us to further explore how tardiness was viewed by students parents and school staff the analysis relates to how tardiness is viewed in the material the thematic content analysis showed that perspectives on arriving on time at school are framed by the main theme it depends on this main theme is supported by the following underlying subthemes signals reactions and responses here the main theme will be presented first followed by the subthemes it depends on throughout the material it depends on permeates the analysis students actions were viewed as depending on who the teacher was and how heshe behaved when they arrived late moreover students actions were influenced by many factors the importance of the school subject the motivation towards school in general support from home and time of the day similarly the teachers understanding and handling of late arrival was related to a number of various circumstances the teacher himherself the student the circumstances of the late arrival and lateness frequency when it came to the parents views on the issue the answer was it depends on thus they told their stories about families and teachers however the staff on the student health team at school b did not explicitly mention tardiness but discussed school attendance and truancy in general terms and mentioned the importance of collaborating with parents that is from their perspective it depends on the parents if students arrive at school on time or not parents were seen as either supportive or insufficient in their role in relation to the main theme and shedding light on the complexity of tardiness the developed subthemes in the analyzed material is as follows tardiness depends on what signals are perceived regarding being on time how tardiness is met by reactions of various kinds and how students respond to expectations and actions related to tardiness notably these subthemes should be seen as a product of the analysis aiming to describe the material in the best way possible to answer the aim of the study the subthemes should therefore not be understood as mutually exclusive but rather as mirroring the complexity of the issue signals the first subtheme signals includes accounts of unclear signals about the importance of being on time the signals relate to expectations and norms and include issues of structure predictability and belongingness the mothers saw no consensus among the school staff regarding how tardiness is viewed and handled in school they explained the various ways in which teachers dealt with students as disparities in teachers tolerance and as normalizing problematic behavior the mothers requested higher expectations from the school regarding students being on time they expressed that it is important from a security aspect that the school notice students arriving late as a parent you want to know that your child is at school and nowhere else furthermore they believed that the students themselves would like to feel they were expected to be on time and that this emphasis is about respect and routines a time is usually to be held to for a reason so if you do not show up or do not bother being on time then you do not show respect for it everything i think is about consideration respect and cooperation we are numerous at the school it should work for everyone and then slipping in when you feel like it or not showing up at all this affects oneself first and foremost but affects others as well you get into it there just has to be a routinein our family we are useless at being on time but you have to try and then there are surely families who but my goodness come on time it is well a worldly thing there are worse problems in life but somehow the school must uphold routines if you dont have a routine in schooland do not have one at home where do you have it if you are a youth you have these two platforms and then perhaps a hobby and then there must be security in this the mothers story illustrates the importance of respect for others through punctuality but also of the school itself as being responsible for maintaining structure which can be understood as helping families struggling with punctuality the teachers in the two focus groups at school a and b had different views on late arrival some of the differences were between the two schools or related to what grades they taught some teachers expressed that they expected students to be on time while others did not seem to care if students were a few minutes late it seemed to depend more on the situation than on the student the teachers were said to be more understanding if their class followed eg physical education as well as if the student was usually on time if a group of students arrives late one teacher said she directs her attention instead to those who arrived on time and praises them furthermore in the material arriving late seemed not to be viewed as being equivalent to being absent from an entire class the teachers said that being on time did not seem to be important for some students this idea was extended to families that is teachers in the lower grades said that not all parents found it important to help their children be on time these teachers also expressed more responsibility and caretaking that fosters a sense of belongingness one of the teachers said so that youand that you get in contact directly so if a student does not come to school for example and you have not received an illness report or any other absences then you must call immediately of course the school staff in this school also discussed the importance of being clear with the students about what is expected of them and what happens when they do not live up to those expectations they begin arriving a little bit late from breaks linger dont take things seriously or the student left home a little bit late and of course it affects others too those who are always there on time laughter so of course that is part of the reason why we have tried to work on it the students stories also include descriptions of blurry signals regarding expectations about arriving on time depending on the reactions from the school the students maintain there are no clear norms regarding punctuality or being on time for lessons reactions the second subtheme is about how tardiness is handled by teachers in the focus group interviews with students the most common description of what happens when they are late was that no one reacts in one of the focus groups the girls were asked what would happen if they arrived late the reply was that the teachers most often do not respond at all to late arrivals however it depends one of the girls said it depends sometimes they do not react at all another girl continued often and a third girl said i would say that they do not react at all similarly the boys said it depends it is different that is the students pointed out that sometimes being late was met with no reaction but if handled the reactions vary from teacher to teacher some simply noticed it and said welcome while others punished latecomers by screaming and shouting at them therefore teachers reactions to late arrivals were seen as being unpredictable in some ways the material analyzed showed that these variations are understood by the students as relating to a specific teacher or on the other hand to a specific student that is all students are not treated equally these variations recurred independently of interviewees students expressed that late arrival was sometimes recorded in the electronic system but sometimes not if the students did not notice such a record they interpreted it as no reaction from the teacher registration in the electronic system decided whether the student was judged as being late or not this was in some ways predictable for the students eg which teacher would register tardiness but even among those noting it the handling of the situation varied some teachers at school b noted every single tardiness minute while others recorded only if someone was really late although what was considered really late differed among teachers the teachers at both schools and the sht spoke about a 20percent limit to school absence measured from the beginning of the term when a student exceeded that limit the sht initiated a meeting with the parents some teachers said they used a strategy to ignore students when they were late to class they just went on with their lesson without paying attention to the latecomer further some teachers simply asked the latecomer why so the analysis shows that what the students define as no response to a late arrival sometimes means a response but a nonsocial one students relate responses to social reactions in the relationship between teacher and student one of the boys did not want to be asked for an explanation as to why he was late it is good if they ask why you are late so you can explain there may be reasons a girl wanted more caring questions from the teachers they dont ask us yes why are you late or ask for the reason why were late they just note the absence they are so used to it the girls had different opinions about the teachers caring questions although they do not want to be absent for a long time without the teacher noticing they wanted to be missed in addition in the mixed group questions about being late were considered preferable although a lack of reaction to tardiness was found in the material the opposite was also interpreted from the stories told with the analysis showing that powerful reactions from teachers are also important teachers who felt provoked or interrupted sometimes reacted aggressively their various stories about situations involving late arrival showed how teachers feel about youths some teachers described students flinging and kicking on the door or simply waiting until the lesson began and then coming in other teachers at the same school based the stories of their ambition to create a welcoming classroom with opened doors and on thoughts about why students arrive late or drop out of class or even from school in regard to reactions to tardiness doors played a central role in the material from school b the students saw a closed door as a clear signal that the lesson had begun on the other hand the door could be open even if the lesson was in progress and the students could just step inside this was experienced by the students as being unclear and showed that lessons could begin in various ways depending on specific teachers and how they set up their own lessons the girls understood that teachers do not want to be interrupted when they begin a lesson respondent girl she held a review then it is another thing if she is holding a review interviewer if she has a review then she reacts r girl yes then she doesnt want people knocking on the door it disturbs everyone else and also her review other teachers not only close their door but they lock it which extends the length of the absence that will be reported some teachers they do this if you are a little late you cannot get in then you get marked even more absent than you really were so you really were earlier than the report shows because the teacher didnt let you in and then you want to be on time you do not want to get an unnecessarily long absence the teachers lock the door not just close it furthermore in one focus group with teachers locking doors was pointed out as being a controversial activity related to security aspects the rules about locking doors have been changed one teacher said after a crime was committed in a swedish school two years earlier when a young man killed a student and a teacher and seriously hurt a group of young students the other teachers in the group took no notice of this comment and continued describing their strategies in handling late arrivals and how they felt provoked by students knocking or kicking on the door to get in unpredictably students mentioned the strong reactions from teachers in some cases they said that the teachers reacted more strongly to someone arriving late and knocking on the door it seemed to depend on what was going on in the classroom at the time the students said that teachers seldom reacted if the students in the class were working individually while someone arrived late on the other hand they pointed out that some teachers not only respond negatively to being interrupted but also to other events in the classroom there were accounts of teachers frightening students by their behavior one student reporting one may be scared of some teachers so then one doesnt want to be late they may be very angry the students who encountered screaming and shouting teachers said that they could avoid such treatment by being on time but their narrations also contained accounts of various behaviors among teachers behaviors that are not always predictable however in one of the groups when shouting teachers were mentioned this was not considered a constructive way to handle latecomers even though students found they were seldom late to classes conducted by those teachers r boy it is good that they record an absence but it feels excessive that they stand there and scream r boy yes exactly it is our choice anyway if we arrive late or not then he can record us as absent nothing else it affects us not like this stand and mess just because you are late i what do you others say about this r same here just go in and sit down and then they record you absent and so yes it will be like that then there is nothing more you shouldnt have to talk about why you are late and so on it is just unnecessary i at the same time you said that the teachers who get angry those are the lessons you go to to avoid it r boy yes then it works thus the students will be on time r boy yes i was thinking the same thing i and then the teacher has achieved hisher goal r boy yes from the above quotations it is clear that the students believe that late arrival is simply their own choice and that they do not see themselves in relation to others however some of the students could see the contradiction in wanting the teachers not to react but at the same time coming to class to avoid an aggressive teacher responses the last subtheme focuses on responses that is issues that strengthen the willingness to be on time and that contribute to tardiness and absenteeism in the interviews with the students various perspectives on the relevance of being on time were emphasized some expressed the view that classes important for high school were prioritized others prioritized classes with teachers they found kind and interested and still others mentioned the importance of being with friends students also found that the short time was a motivation for going to school and being on time for the most part students wanted to avoid such aspects that create discomfort they described angry and shouting teachers and angry parents but there were also aspects that could be a motivation in the long or short term one boy who had been truant and tardy a lot said i had to start thinking about getting into high school so school started to feel more important he was motivated by thoughts of his future life some students discussed being late as their own choice according to how seriously they view school and education they were more motivated to attend some of the lessons that is they were found prioritizing various subjects some were noted as being more important and others were considered more boring thus students said they were seldom late to those prioritized classes and more often arrived late to other classes there were also differences in maturity among what was considered motivating aspects one boy was motivated by more urgent needs satisfaction to avoid conflicts with his mother he had coffee at school in the morning nothing else motivated him r boy yeah i dont know not so damn much i have to come here otherwise my mom will not be so damn happy if im home every day i it is your mom r boy yes she forces me to go to school i yes r boy yes i so its just about force never any strong desire or anything r boy no damn it you get coffee here i you get coffee you dont get that at home r boy yes damn it but i have to make it myself i cant stand it in order to understand what motivated students to make them be on time for school or even go to school we asked them to describe their dream school they told stories about starting later in the morning better teachers better technical equipment better food and more variety and flexibility the relevance of motivation was found in the parents stories as well however parents perspectives on motivation were related to the future of their own child that is school is important in obtaining a higher education andor a job in the material based on the focus group interviews with school staff in both schools this perspective was not made explicit when the staff talked about motivation their stories were mostly related to how they did not find that students andor parents prioritize school the staff questioned the students andor parents when it came to prioritizing being in school andor on time for class when the school staff were asked to describe an attending student they mentioned individual aspects such as being curious motivated healthy idearich and willing to learn in addition aspects related to their social environment were mentioned being pushed by their parents living in a family engaged with the school other activities outside school and having friends the teachers in the secondary school on the other hand noted the importance of being welcoming and showing that they as teachers were happy to see the students and of developing good relations between teachers and students in terms of pedagogy they tried to make education old school that is predictable and without too much involvement of the students in order to make it easier for them from their perspective this was a way to motivate their students discussion the results showed that tardiness viewed by students parents teachers and other groups working in the school including the student health team is a complex issue however based on various signals relating to how important attendance was understood to be how eventually tardiness was reacted to and the students responses the pattern we found illustrates the unpredictability encountered by the students whereas tardiness itself was not viewed in similar ways by the focus groups nor was it handled equally these results are discussed below first in relation to the theme developed from the analysis and then based on our main theme and how it could be understood from a socialecological perspective signals parents and students interpreted the signals from school as indicating that punctuality was not that important this can be understood as meaning that teachers have no expectations of you to be at school on time previous studies show that school attendance is a sign that the school is well structured and predictable for the students 26 buhler karlsson and österholm 54 found it important to promote school attendance by starting and ending the school day in the same way every day teachers ignoring latecomers also indirectly send out signals that you as a person are not important this result is in line with previous findings 55 expectations of how people act in different situations produce norms related to how we behave in a specific environment and indicate what the culture is signals can be used to create a sense of belonging or create a feeling that you do not belong to this place or culture belongingness has been found as essential in the healthpromoting school model described by rowe and stewart 56 to feel included in and connected to school is important for health and school achievement 57 wenzel 58 found that perceived support from teachers measured as for example my teachers really care about me and my teachers like to help me learn was a positive predictor for student motivation school interest and class interest one year later reactions latecomers encountered different reactions schools have no shared and clear policy or rules to handle late arrival some teachers locked the door others registered the tardiness in the electronic system some shouted and still others took no notice of the latecomers the predictability became even more unclear from the students viewpoints because sometimes the same teacher reacted differently to the same situation involving different students this result shows that not too much seems to have happened since damico 32 carried out his research and found no consensus among teachers on the other hand treating students unequally might be how teachers interpret compensatory assignments 39 swedish compensatory assignments offer support related to the students needs for equal access to education with students coming from a vulnerable family andor environment or with atrisk students teachers probably want to be welcoming and caring in order to mitigate their vulnerability the results indicate that teachers from school a saw the students wellbeing and school achievement as a part of their family and the entire living situation teachers who sometimes emphasized the differences among students created an unjust school environment this was also found in a swedish 59 qualitative study where the students reported feeling like black sheep or failures while other students were described as being teachers pets or high achievers the black sheep described how teachers behavior for example shouting and screaming at them had affected their selfesteem and interest in schoolwork in addition banfield et al 60 described offensive teachers who humiliated students picked favorites and were rude or sarcastic which in turn affected the students wellbeing handling tardiness by being offensive to students is in line with damicos 32 description of reducing negative behavior on the other hand freeman and colleagues 33 found evidence that skills training and family support in addition to incentivetraining to increase the level of student punctuality strengthened positive behavior the students in our study asked for more caring questions from the teachers and for greater openness to being exposed to unforeseen events this could be seen as young peoples expectation of a relational perspective on teaching 61 in addition a relationship with or interaction between teachers and parents was also mentioned by mothers an idea related to the fact that the primary means of communication was expected to be via the electronic system mothers students and teachers alike mentioned security aspects but related to different situations students and mothers wanted someone to start looking for latecomers because something may have happened to them on their way to school teachers in the lower classes also thought along these lines secondary school teachers on the other hand mentioned security in relation to school attacks and the need to keep the students in a safe place away from external threats school shootings or school attacks have been a reality for many years in western countries 62 the risk that something would happen to a student on her or his way to school is more likely than a major attack in the school itself the responsibility of parents and of the school towards the students is an ongoing topic of discussion in sweden but in some ways the rule is clear parents are responsible for their children arriving at school on time the school is responsible when the child is at school but the responsibility is twofold between school and parents 63 this could explain the differences in the focus of the teachers parents and students responses predictability a culture that creates a sense of belonging by giving caring and supportive signals in school affects whether the students arrive on time or not findings 64 reveal that a negative sense of school belonging has a negative impact on intrinsic motivation and perceived learning the students saw themselves as solely responsible for arriving on time and this was only related to their own decision on the other hand their responses showed that their decisions were influenced by teachers behavior parents expectations future plans for higher education and in some cases simply by the short time period at their disposal another finding was the school staffs discussion about motivation motivation was described from an individual perspective as a characteristic of the student or coming from a supportive family none of the teachers mentioned motivation as the responsibility of the school organization or as part of pedagogy even though a number of previous studies have noted that motivation is part of classroom pedagogy 65 the teacherlearner relationship is also an important factor in creating engagement and promoting educational outcomes 66 we interpret this finding to mean that this school had not created a sense of belonging for the students nor had they from the students viewpoint created a desire for learning both students and parents asked for better interaction and communication with the teachers and the school the increased digitalization of school involves the risk of losing communication and interaction with parents if all primary communication is effected through texting and through registration in an electronic program parental engagement in school has been shown to be important for school achievement 67 and for a healthpromoting school 16 17 18 the results show that teachers do not differentiate between school refusal behavior and truancy or school withdrawal and neither does the school health team they focus more on absenteeism percentages and inputting these into the electronic system to begin analyzing the problem if the absenteeism level exceeds 20 percent the reason for tardiness must form part of the analysis that determines effort universal and individual efforts do not contradict each other both are needed in this article we focus on how the school can be a supportive environment for students and their families in regard to students arriving on time to promote school attendance specifically punctuality one must examine the student and his or her individual behavior within a broader social and cultural context in which the student the family and the school interact the main theme it depends on will now be discussed from a socialecological perspective according to socialecological theory 43 different environments influence our behavior and health peoples thoughts behavior and perspectives are transmitted among these environments we move between different environments our family neighborhood school work and so on from a broader perspective the childs home and neighborhood is also part of the system whose components interact with each other 4368 earlier studies have shown that young people see the interaction between the school environment and their home environment as important for their health 59 this is in line with the idea behind healthpromoting schools 69 and the entire school approach 70 the main theme it depends on was developed to describe the various aspects influencing how teachers give signals and react in relation to tardiness and how this reaction elicits responses among students the interpretation of it depends on provides a picture of an unpredictable situation for both students and parents as mentioned above predictability and structure during the school day have been shown to be important factors for school attendance especially for children with schoolrefusal behavior 71 in addition other studies illustrate the importance for all children of consequent clear and equal rules and norms 72 the mothers interviewed in the present study stressed the importance of the school as being a place for structure and safety and encouraging an arriving on time culture based on the fact that some children live in a vulnerable situation in families with many social problems this finding is in line with the directive from the swedish government about compensatory assignments 3940 the socialecological theory explains how specific cultures develop in different environments the students move between school their homes and places for sparetime activities these places are culture carriers but the students affect and are affected by these different contexts when they move and interact within them the common setting for the students is school while the other settings differ more or less given that homes neighborhoods and to some extent settings for sports and other activities differ according to the families socioeconomic position 73 schools in sweden are obliged to provide equal access to education and shelter to be compensatory and to strive to equalize inequalities although sometimes the opposite is the case even in sweden 74 in line with this the teachers of younger students see their work in encouraging punctuality as a part of their educational assignment as an interaction between how they organize their schoolwork and how the students respond and how this in turn affects the classroom environment this example illustrates the ecological system and the constant movement within that system individualized education on the other hand where teachers say take your books and continue where you are creates a view of the individual student as an isolated island without any connection to the environment this reductionism assumes that a system can be broken down into single components which is the opposite of a system in which parts interact and must be understood in relation to the whole 75 however why should students arrive on time if they do not assume they relate to others or to the environment lastly the results from our study indicate that tardiness is understood by the participants as a problem related to both the school and the family also observed in research on adolescent adjustment illuminating not only the students ability to adapt with school environment 56 but also the impact of parenting on these abilities that is positively engaged parents can contribute to adjustment 7 8 9 10 that means vulnerable families need more support from schools and maybe also social welfare services on how to become more involved in their childrens education 76 altogether the socialecological theory 43 as well as the school adjustment perspective 568 illuminates the importance of family involvement to promote school attendance among students a social perspective including the whole social context of the adolescent is necessary methodological discussion a focus group interview design was chosen for the present study students school staff and parents were invited to participate in order to provide different perspectives on the topic of our study school staff were deliberately interviewed in groups based on their profession since we assumed that they would have different views on tardiness depending on their professional role and experience with students it turned out that they did speak about tardiness in different ways two parents agreed to be interviewed preferably one to two focus groups should have been performed to give equal weight to the stories of students school staff and parents this approach would have strengthened the results of the parents perspectives on tardiness in the present study the two participating parents provided valuable insights into their views on tardiness in fact it was the interview with the parents that introduced tardiness as a topic of interest and led us to study it in more depth recruiting students ensures that adolescents from various backgrounds were included since school is mandatory however students absent from school when recruitment was carried out may not have received the information and were thereby excluded from the focus groups students absent at the time of recruitment are probably more likely to be absent from school in general and if interviewed would perhaps provide important insights into the reasons behind tardiness conducting individual interviews instead of focus groups would perhaps have decreased the risk of peer pressure among the students when interviewed and made it more likely that they spoke their minds on the other hand focus groups with peers could be a more comfortable venue for students than being alone with the researchers in our opinion interviewing the students in samesex or mixed groups based on their own choice made it more likely that the participants were comfortable and could express their opinions in addition focus group interviews are preferable when seeking insights into meaningful themes embedded in discussions of the topic chosen the included schools school staff parents and students were not representative although we included both a primary and a secondary school and the staff members interviewed represented all key professions our study found that a thematic analysis provided the best opportunity to answer our research question criticism of a thematic analysis includes individual accounts and language use being lost and the flexibility of the method making it difficult to know what aspects to focus on we aimed to present patterns of shared meanings it turned out to be difficult to create themes that were mutually exclusive as recommended by eg braun and clarke 53 nonetheless we believe the thematic analysis is the best analytical categorization for the material in our study the present study used socialecological theory and healthpromoting perspectives as a framework to strengthen our interpretations the involvement of three researchers in the analysis process and a continuous discussion during all steps of the analysis strengthened the process and the credibility of our results all authors agreed on the final themes we have also described our methodology and analysis in detail to allow readers to form an independent assessment of credibility to judge our studys resonance the preliminary results were presented to and discussed by some teachers and the principal from another school for feedback the results made sense to them conclusions the picture that emerges from our analysis shows both differences and similarities among the groups participating in the study parents and students shared the same idea about how schools handled lateness but their views on responsibility differed some of the students saw only their own responsibility as a factor affecting punctuality the inability to see their role as part of a greater whole was more prevalent in secondary school teachers than in teachers in the lower grades late arrival is a sign of adolescents maladjustment from a holistic viewpoint in a school as an organization created to interact with students families and school staff the results of this study imply the importance of organizing the school day more predictably and with a better structure for the students such predictability can be expressed by starting the school day at the same time and in the same manner every single day further the staff needs to agree on a common policy on handling tardiness the result also indicates that schools must further develop their effectiveness in relation to both students and parents that is they must strengthen their work in promoting students sense of belonging and in relation to students interests and motivation to come to school in dealing with tardiness especially it is important to interpret this behavior as a signal understood in a greater context in further research we suggest developing a model of how to handle student tardiness based on predictable standpoints this model should be developed and tested in collaboration with researchers teachers students and parents author contributions conceptualization ew and mw methodology ås ew and mw validation mw investigation ås ew and mw resources lt writingoriginal draft preparation ås ew lt and mw writingreview and editing ew and mw supervision mw project administration lt and mw funding acquisition lt and mw all authors have read and agree to the published version of the manuscript

tardiness is a common problem in many schools it can be understood as an individual risk for future problematic behavior leading to absenteeism school dropout exclusion and later health problems tardiness can also be examined in relation to a broader socialecological perspective on health the aim of this study was to analyze students school staffs and parents views on students tardiness in two swedish schools a focus group interview design was used with 21 school personnel 21 students in grade nine and two parents the data were analyzed by using thematic content analysis the results illustrated the main themeit depends on regarding what will happen if a student arrives late to school lessons this finding is further explained by the subthemes about teachers signals and reactions and the responses from teachers and students the conclusion showed the importance of organizing the school day more predictably for the students late arrival is a sign of shortcomings in a school organization it is necessary to develop guidelines related to how to handle students late arrival based on predictable viewpoints but even more so on how to promote students sense of belonging and their interest in and motivation for going to school

introduction indigenous people are defined by the world health organization as populations or communities that live within or are attached to geographically distinct traditional habitats or ancestral territories and who identify themselves as being part of a distinct cultural group descended from groups present in the area before modern states were created and current borders defined they generally maintain cultural and social identities and social economic cultural and political institutions separate from the mainstream or dominant society or culture every nation has unique cultural practices ancestral lands precontact and postcolonizer histories and traditional stories within the canadian context the government recognizes three distinct groups of indigenous people first nations métis and inuit in the continental united states indigenous peoples are recognized as constituting two broad groups native american peoples and alaska native peoples native americans can be further divided based on an area of residence for example northern america resulting in certain tribes traditional lands spanning both the usa and canada in the usa there are 574 tribes recognized across 35 us states with 97 million identifying as aian in canada over 16 million individuals identified as indigenous in the 2016 census indigenous populations are the single fastestgrowing population and much younger on average than nonindigenous canadians indigenous youth face a wide range of stressors such as suicidality substance use racism discrimination lateral violence systemic violence and family violence compared to nonindigenous youth past colonial policies driving family community language and cultural disruption are evident through population containment actions and their related impacts for example in 2021 there were 58 longterm boil water advisories in 38 indigenous communities further to this many reservation communities experience unsafe housing unsafe water a lack of a sanitation system and other ecological issues high rates of adverse childhood experiences and decreased wellbeing in indigenous youth are commonly seen renewed trauma burden exists with the current initiatives in uncovering residential school burial grounds despite the multilevel adverse contexts indigenous youth remain resilient reflecting their resistance persistence and ability to thrive however to date no systematic review of the literature has occurred from a resilience lens resilience has numerous definitions in western science resilience has evolved to denote everincreasing complexity currently resilience reflects processes promotive factors outcomes trajectories and the potentiality or capacity of a dynamic system to adapt these various aspects can be organized along bronfenbrenners ecological model for where these resilience facets mainly exist for this paper we were guided by the broad definition provided by united nations international childrens emergency fund resilience is understood by unicef as the ability of children households communities and systems to anticipate prevent withstand manage and overcome cumulative stresses and shocks in ways which advance the rights of every child with special attention to the most vulnerable and disadvantaged children supporting resilient development therefore means promoting riskinformed programming which includes development of nationally led common risk assessments disaster risk reduction climate change adaptation conflict prevention and peacebuilding unicef and partners can build resilience and reduce vulnerability by supporting the capacities of local systems and structures to address these systematically by integrating risk factors such as climate change into public services planning and delivery while indigenous cultures focus on responsibilities as people of the land western approaches focus on rights given prior laws in various countries that prohibited cultural practice the united nations created the declaration on the rights of indigenous people in 2007 this global recognition established indigenous peoples right to identify as their own distinct group practice traditional medicine and have selfdetermination of their collective and individual wellbeing practicing culture is recognized as a fundamental right and fundamental pathway to wellness that has been practiced prior to the establishment of countries building upon the efforts of the undrip some countries have established tribunals and commissions to address the recognition of the rights of indigenous people redress structural and system rights infringement and create an action plan for respectful relationships in canada the truth and reconciliation commission published their final report concluding that indigenous people have long faced discrimination and cultural genocide in canada with 94 calls to action to effect positive change the truth and reconciliation commission has recognized that longheld colonial policies have had the effect of limiting the right to practice culture and learn culture necessary to pass along traditional ecological knowledge for ancestral holistic health as well as the basis for indigenous resilience among the indigenous languages with which we are familiar there is no word for resilience per se for example among the haudenosaunee words are polysynthetic and the morphemes string together to provide a complete thought for example among the haudenosaunee people of the longhouse the thanksgiving address is the center of their traditional way of life the mohawk word for giving thanks tayethinonhweráton breaks down into resilience components of who what how where and when this word reflects a person who has balance with all entities those that are seen or unseen this is represented by the dome shape of the world reflected in the shape of the top of our heads with the presence of the four directions this level of consciousness is unlimited and heartfelt the final section of the word denotes speaking it aloud into existence such that all minds have come together to rejuvenate the communityfeeling sensing and responding as fast as the thought travels given the variation across indigenous nations a panindigenous model of resilience therefore is not attainable a prior scoping review article on resilience in indigenous youth found that either western resilience definitions alone were used or these were primarily combined with indigenous concepts within a twoeyed seeing approach given the scarcity of published studies the current review as well as the toombs et al review included gray literature however the indigenous youth resilience field has evolved to be able to conduct a scoping review of the peerreviewed only literature and focus more broadly on different indigenous populations the toombs et al study found that a key indigenous youth resilience process was community connectedness this new review strives to explore resilience in terms of studyspecified definitions and measures in addition to identifying youth resilience strategies leading to increased wellbeing this review expands on the literature by looking at populations in both canada and the continental united states providing a more holistic approach to determining resilience strategies among indigenous youth additionally this review aims to provide an update on the literature surrounding indigenous youth resilience since the publication of toombs et al in 2016 methods data sources a search of relevant databases and select individual journals was conducted to identify peerreviewed literature published between january 1 2008 and november 30 2020 the year 2008 was selected as it includes articles post the significant undrip document creation and adoption by the usa this document supported recognition of indigenous sovereignty and the need for investment in indigenous knowledge hence the authors hypothesize that the most relevant literature will be published in 2008 or later table 1 displays the databases and journals used in this study each database had an individually identified search strategy developed in accordance with the subject headings used in the specific database this review was guided by the input of a six nations of the grand riverbased community research committee composed of health researchers health practice leaders youth educators and elders who met regularly with the indigenous youth lead author the search strategy was developed with the aid of an academic librarian and included terms related to indigenous populations adolescents resilience gender and all states and provinces see appendix for a full list of studies level of individualcommunity involvement and perspective used ames et al 2015clark et al 2013fraser et al 2015gray et al 2016harder et al 2015kenyon carter 2011krieg 2016morton et al 2020pertucka et al 2016ranahan and yuen 2017snowshoe et al 2017strickland and cooper 2011tiessen et al 2009trout et al 2018 no explicit definition of resilience instead used a broad concept of resilience that incorporates aspects of macromesolevels of resilience from western and indigenous ideologies gray et al 2019hatala et al 2020njeze et al 2020ruttan et al 2008ritchie et al 2015sam et al 2015sasakamoose et al 2016stumblingbearriddle 2012ungar et al 2008wexler et al 2013yeh et al 2015 macrosystem westernized definition of resilience barnett et al 2020hatala et al 2019mohatt et al 2011sasakamoose et al 2016ungar et al 2008wexler et al 2014wexler et al 2016isaacson 2018kral et al 2014sasakamoose et al 2016freeman 2017goodkind et al 2012isaacson 2018kral et al 2014mohatt et al 2011ruttan et al 2008rasmus et al 2014wood et al 2018 macrosystem indigenous definition of resilience baldwin et al 2011barnett et al 2020gray et al 2019hatala et al 2017hatala et al 2019isaacson 2018kral et al 2014mcmahon et al 2013mohatt et al 2011wexler et al 2014 mesosystem indigenous definition of resilience bruner et al 2019kral et al 2014victor et al 2016 microsystem indigenous definition of resilience fitzgerald et al 2017hatala et al 2017ulturgasheva et al 2014 microsystem westernized definition of resilience terms gender was included as an effort to capture research involving twospirit youth an umbrella term reflecting a third gender and traditional role where a male understands the spirit of a female and vice versa and not necessarily defining lgbtq status in identifying search terms a great deal of heterogeneity was found in the terms used to describe our population of interestindigenous youth youth was defined as spanning the adolescent to young adult years of 15 to 24 over the years various terms have been used to describe indigenous peoples and the youth to ensure that the most literature available was captured terms that may now be considered politically incorrect or antiquated were used the databases and journals included in our literature search are listed below databases ebsco psycinfo sciencedirect social science citation index web of science psycarticles embase handsearched journals pimatisiwin journal of indigenous wellbeing alternative an international journal of indigenous peoples international journal of indigenous health canadian journal of native studies international indigenous policy journal journal of aboriginal health journals were hand searched to locate relevant studies that have possibly been inaccurately indexed or are not indexed at all ensuring that relevant studies are not neglected additionally it allows for studies that may not have been captured by the larger database searches to be incorporated into this review study selection peerreviewed articles written and published in 2008 or later were included in the analysis of this review as undrip was adopted in late 2007 our research group posited that an increased number of studies on the rights and wellbeing of indigenous people would be published after the adoption of the declaration as such studies from 2008 to 2020 were included studies published previous to 2008 were not included in this review additionally included articles focused on indigenous populations in canada continental united states hawaii and alaska studies on indigenous populations outside of the continental us including those in the us affiliated pacific islands were excluded from the study eligible studies reported on youth in our age definition of 1524 years of age studies including participants that were older or younger than the specified age range were excluded in terms of resilience studies had to include protective factors or strategies specific to indigenous youth and communities studies were also included if they identified risk factors particular to indigenous youth although most also included resilience factors risk factors and resilience factors had to be reported directly from youth to be included in this review studies that had parentsguardians other adults or proxies reporting on resilience factors and strategies on behalf of youth were excluded from the analysis all included studies were from published peerreviewed journals data extraction the population type and location sample size research design definition of resilience resilience measures used challenges to resilience resilience factors and resilience strategies used were extracted from each study and listed in table 3 not all studies provided data points for each category of interest comparisons between studies were drawn however by noting the specific location and community we were cautious about generalizing about indigenous peoples each study underwent several rounds of screening and review before inclusion in this scoping review studies identified by our search strategy were first screened by title and abstract screening followed by a fulltext review during both stages of screening each article was reviewed by two independent authors for inclusion two independent reviewers extracted relevant information from eligible studies according to our prespecified extraction factors mentioned in table 3 the methods used in conducting this scoping review ensure its accuracy and consensus through the use of interrater reliability where at least two raters had to agree on the inclusion of a study additionally to ensure results were not skewed one reviewer of each paper was a member of an indigenous community in canada results a summary of the results extracted from each paper can be found in table 3 of the 44 studies included in this review 35 were from the databases searched and nine were from the hand searched journals more than 50 indigenous communities were included in this review the studies selected for inclusion from the literature had a variety of different methods used to collect data there were 26 that followed a primarily qualitative research design 8 followed a quantitative design and 10 were mixed methods studies communityconsulted focus groups that used openended semistructured interviews were the most commonly used in qualitative and mixedmethods studies this format provided a culturally based way to consider resilience consistent with the oral and storytelling traditions among indigenous peoples measures of resilience quantitative studies focused primarily on the outcomes of mental health and protective factors measured at a single time point mental health was measured using validated questionnaires primarily centre for epidemiologic studies depression scale who survey of health behaviours in schoolaged children generalself scale of the march selfdescription questionnaire general mattering scale and positive and negative affect schedule in terms of promotive or protective factors many studies used the rosenberg selfesteem scale other questionnaires used to measure resilience and sense of community included the child and youth resilience measure child version cyrm28isaacson 2018 the awareness of connectedness scale reasons for life and the satisfaction with life scale for children qualitative and mixed methods primarily used interviews focus groups and picture taking to allow youth to discuss individual and community strengths and relationships mixedmethods studies also measured resilience quantitatively studies reported individual quotes or images from youth to illustrate their thematic results quotes provided indications of several resilience factors referring to elders they are just like parents but they are your grandparents sometimes i can connect better with them because theyre not as strict as my parents i have a great relationship with my grandparents i see them every weekend meals together are important they are hilarious this quote not only identified intergenerational connection but also the qualities of openness acceptance humor and shared attention in the relationship intergenerational relationships as carriers of landbased identity were noted its the same river that flows in my reserve that flows through the city here … my own reserve land and my grandmas land is also here and it means a lot to me because i know it if i go down the river or i head up where it takes me up north and it goes to my grandmothers land like either way this is the road for me and i know this river this water and this place definition of resilience resilience factors and resilience strategies of the 44 studies included 14 did not provide an explicit definition of resilience these studies used a general concept of resilience in many studies resilience was defined along western conceptualizations reflecting adaptive coping and persistence strategies other western resilience concepts included the following selfesteem future orientation positive mental health mattering and personal identity four studies listed multiple definitions for resilience table 1 provides an overview of resilience definitions in terms of how they related to different ecological levels microsystem perspectives of resilience in indigenousspecific approaches resilience was identified as beyond health and more closely aligned with an individuals intrinsic spirit and hope looking at intrinsic factors strategies youth who reported highselfesteem optimism positive cultural identity sense of belonging sense of accomplishment taking personal responsibility and selfreliance all had higher resilience when faced with stressors definitions from microsystem perspectives on resilience are found in table 2 mesosystem perspectives of resilience indigenousspecific perspectives valued relationships among family extended family clan and nation relationality was resilience strategy definition selfesteem a belief in yourself being comfortable the way you are optimism a positive outlook toward the future positive cultural identity a feeling of personal pride being associated with an indigenous community and its cultural practices belonging a feeling of comfort and support in your environment and community accomplishment being able to learn and perform new skills these can be both culturally important skills like hunting or societally important skills like getting a new job and being able to cook selfreliance being able to confidently provide for yourself and find support that is necessary to work through problems increased confidence in leadership capabilities love pride respect for elders and family creativity and strength were all emphasized factors that youth found helpful indigenous knowledge increased when participating in group participants reported that they learned many important strengths of samoan culture considered to other people as well as to the natural environment common indigenousspecific concepts included connectedness reciprocity in relationships spirituality relationships to the land balanced relationships and collective healing caring for nature was a theme that appeared less frequently despite indigenous youth being at the forefront of many indigenous environmental advocacy efforts by spending time in nature indigenous youth who lived far away from their home communities reported feeling a greater sense of connection with their homelands nature also modeled resilience interactions and relationships for the youth by seeing the seasons change continual growth and interdependence of natural elements and watching animals interact with each other indigenous youth reflected on change adaptation and the cycle of renewal additionally youth reported that being in nature generally calmed them and gave them a sense of peace and reestablishing personal control of emotionality while crosstime trajectories are not evident in research some studies considered pathways to resilience from microand mesosystem perspectives a study by fitzgerald et al used path analytic statistics to test a causal model from suicidal ideations or a path to resilience in a sample size of 3446 indigenous youth this model identified that suicide attempts decreased when youth had supportive adult relationships which predicted youth resilience another model identified pride in cultural identity and positive community associations to be the most predictive of youth resilience specifically pride in identity led to an increase in selfesteem of 5 while positive community associations led to an average increase in selfesteem of 226 macroperspectives of resilience indigenous definitions of resilience placed an emphasis on communitybased systems of resilience including the following healing practices like traditional medicine traditional teachings native language learning and the process of forming meaningful relationships despite the breadth of prespecified factors covered some studies decided to allow youth participants to create their own definitions of resilience this allowed for youth to create personalized resilience models and account for differences in cultural interpretations of resilience challenges to resilience despite the heterogeneity in indigenous communities studied there were significant similarities in stressors general stressful life events such as changing schools bullying poverty pregnancy death of loved ones and peerfamily suicide were prominent youth responses when asked about stressors studies that indicated risk factors did not ask youth participants to expand on their rationale for selecting a particular life event and instead had participants either spontaneously list or discuss these or have youth select from a list of prespecified stressors where sex differences were considered females reported experiencing significantly more stress than males females reported a higher incidence of depression and lower selfesteem as measured using the new mexico youth risk and resiliency survey and rosenbergs selfesteem scales respectively some studies linked this to the potentially higher rate of violence and sexual abuse that indigenous women may face drug and alcohol dependenceuse was noted in several studies one study emphasized selfmedication as a key challenge to resilience with youth depending on drugs or alcohol in attempts to cope with chronic stressors in their life although a strong familial presence generally provided indigenous youth with the strength to persevere sudden changes in the family dynamic parental unemployment the intergenerational transmission of trauma and lack of parental support played a role in challenging indigenous youth resilience lack of communication attributed to intergenerational trauma contributed to a disconnect between indigenous youth and elders and their communities systematic racism was commonly reported by youth racism led to difficulty in youth interacting with others outside of their community shame connected to their cultural identity and trouble with law enforcement while most youth recognized that their ancestors had to contend with hardship due to colonial impacts some studies found that youth themselves did not believe that they were still impacted by historical factors one study suggested that indigenous youth may feel entrapped by the cycles of adversity and trauma narratives culture remains a significant contributor towards resilient living of indigenous youth for example the concept of walking in two worlds was reinforced it was noted that indigenous youth attempts to maintain physical mental emotional and spiritual wellbeing while assimilating to the mainstream culture this may endanger identity and resilience processes cultural detachment was identified as a resiliencedisrupting process leading to loss of connection to and engagement with traditional language and ceremonies most studies used a strengthbased approach aiming to identify points of resilience that could be proactive and preventative a summary of factors promoting resilience and associated studies are listed in table 4 to summarize these review results on psychological resilience figure 2 below points to a core set of interconnected protective factors at the macro meso and micropsychosocial environment an emerging theme is the importance of physical health including its correlation with positive wellbeing in indigenous youth wellbeing was heavily impacted by holistic health access to healthcare healthy foods safe drinking water and engagement in culturerich community physical activities such as pow wows similarly a study examined how a subsistence diet promotes physical health a healthy diet and a connection to culture and contributes to psychological wellness and resilience through the physical spiritual and mental dimensions associated with connections to land discussion resilience is a complex multifaceted process that involves an interplay between stressors resiliencepromoting factors and pathways for indigenous youth resilience plays a significant role in their lives as they face unique multileveled and persistent stressors while most studies note the role of trauma no studies measured trauma symptoms or experiences directly or comprehensively included such facets as intergenerational trauma loss and grief or ecological anxiety or grief some studies considered sex difference but no studies included in this review considered gender categories or specifically noted twospirit youth this suggests that the definition meaning and process of resilience may change depending on the mental health variables studied as well as the inclusivity of youth groups as evidenced by the literature there are multiple points wherein resilience can be promoted cultural continuity fig 2 review of results highlighting resilience process passed between generations fosters a sense of community connectedness allowing youth to build and have continuity in their cultural identity by continuing to practice cultural ceremonies and language transmission there is continued intergenerational involvement providing opportunities for knowledge sharing and for youth and elders to become better connected connection to the land was found to be a significant strategy used in coping with daily stressors and promoting resilience in indigenous youth studies commented on the importance of interactions with nature nationbased resilience models were not depicted in these studies although there are efforts to convey the unique models for example noronha et al provide a graphic for a haudenosaunee wellness model that emanates from the central elements of the thanksgiving address to specify indicators of resilience factors personal growth is indicated by contributions to the community the study of language and participation in ceremonies a good mind was indicated by adherence to the great law of peace balanced living traditional health practices and recreation this model includes ancestral knowledge and revealed knowledge or knowledge providers and figures indigenous knowledge is based on oral tradition and persontoperson teaching where community resilience is prioritized as the route to individual resilience as indigenous communities traditionally have a more holistic and communitybased sense of health resilience can take many forms such as interactions with nature community participation clanbased affiliations and interacting with family and friends the lessons learned from indigenous communities are that there is an intrinsic connection and renewal present in nature community and culture that promote resilience and wellbeing respectful relationships include selfrelating relating to others and relating to the environment from a perspective of responsibility and relationship to the creator all reviewed studies found that promoting resilience led to enhanced wellbeing among youth recommendations included integrating communitybased or groupbased interventions for youth resilience despite the heterogeneity in the literature for measuring resilience allowing youth to express themselves creatively and allowing the opportunity to explain their process helped elicit youthspecific resilience factors and strategies in so doing participants were not limited to a predetermined or western definition and could highlight factors that researchers and the literature may not have previously considered this type of qualitative research allowed flexibility in the discussions surrounding resilience in a field where validated tools for indigenous youth are minimal as the body of resilience research grows there will be a need for contextspecific measurement approaches and a close examination of factors that may be different between communities for example nationspecific resilience may be derived in part from the language that describes aspects of wellness and valuebased living language learning and ceremonial practices were particularly useful in promoting mental wellness and belonging jongen and colleagues conducted a measurement scoping review from australian new zealand canadian and us research they found 20 instruments utilized mainly from western resilience measure development only three indigenous instruments were found growth and empowerment instrument cherokee selfreliance scale and the american indian enculturation scale these tapped primarily individual assets and environmental resources or only environmental resources only two measured individual assets environmental resources and culturebased resilience in this review individual assets were considered to be skills personal strengths and traits and resilience factors environmental resources included support and opportunities such as peer support kinship networks and adult role models jongen et al suggest that measuring cultural factors such as cultural connectedness indigenous worldviews and spirituality may be of greater importance than individuallevel factors as it has not only been linked to mental health and wellness but also improved socioeconomic indicators and academic achievement notably many studies included suicidal thoughts and depression a major factor contributing to suicide in their measurement and definition of resilience outcomes as reduction in symptomatology lalonde and chandler note that individual and cultural continuity are strongly linked communities that succeed in taking steps to preserve their heritage and achieve sovereignty in important areas are more successful in insulating their youth against the risks of suicide cultural initiatives include solutionfocused approaches such as early support to higher suiciderisk sexual minority youth and gender teachings on roles and responsibilities where all are valued with sacred duties mushquash and colleagues advance the public health perspective as central to supporting indigenous youth resilience in terms of addressing the social determinants of health healthy behaviors and healthy communities in this view resilience is a systemic target with resiliencepromoting policy local knowledge community networks communication networks and preparedness emerge as important to measure in addition to individual and communitylevel outcomes as research begins to be put into practice in communities the results of this review indicate that future research and programming should involve a collaboration of youth and elders collaboration between western and indigenous resilience research may promote understanding and knowledge sharing for increased wellbeing for both the youth and community the twoeyed seeing approach is often used as an investigative framework as opposed to solely indigenousscience perspectives this embraces the collaboration of indigenous knowledge or ways of knowing and westernbased knowledge this approach recognizes that indigenous youth living on reserve rurally or in urban centers are exposed to western socialization and engaged in crosscommunity communications with the greater availability of internet connectivity and presence on social media platforms humor agency in content development teaching and representation are resilience approaches used there are commonalities among intrinsic and familial resilience factors intrinsic factors such as selfesteem selfexpression and selfefficacy have been observed in many populations of varying economic and racial backgrounds supportive familial and peer relationships associated with a sense of belonging and acceptance were seen as sources of resilience across diverse populations despite this school engagement and studentteacher relationships were more prominent in western science than in indigenous science methods future research should compare resilience factors and strategies employed by youth across a diverse array of backgrounds examining whether they may be inherent despite culture socioeconomic status and race implications for practice with indigenous youth in examining the complexity involved in a holistic understanding of resilience in indigenous youth and their communities it is imperative to consider how these learned strategies can be applied the historical involvement of the foster care system in indigenous communities emphasizes how the potential to reunite displaced youth with their culture could foster a greater sense of belonging and assist youth in recovering from adverse experiences and stressors connected to their removal from their families and communities additionally as organizations strive to promote truth and reconciliation moving forward this reviews findings highlight the importance of keeping youth immersed in their culture to promote positive future orientations consistent with indigenous traditions study limitations one major limitation of our study is the lack of included studies on native hawaiian populations although native hawaiian was a search term in our search strategy only one included review made mention of the native hawaiian population and included similar resilience strategies to other indigenous populations it is of particular note that our search strategy may not have appropriately captured the scope of native hawaiian populations due to the inconsistent use of keywords and terminology in publication and countries furthermore the exclusion of native hawaiian populations may be due to the overlap of many reviews that include native hawaiians and pacific islanders in new zealand and australia due to the differences between traditional and current population boundaries many reviews including native hawaiians did not meet the search strategy or inclusion criteria to rectify these limitations in future publications the research team suggests that it may be appropriate to identify specific journals that publish research on specific nations and populations and to undertake hand searches for a more exhaustive capturing of relevant articles to ensure important groups of study are not left out further to this working with hawaiian scholars directly would support accessing gray literature as well as better awareness of existing literature further to this our inclusion and exclusion criteria limited our included studies to peerreviewed published literature this may introduce bias into the results as published literature is more likely to contain reports of efficacious interventions and studies with positive outcomes therefore by excluding gray literature conference proceedings and unpublished literature there is a potential for publication bias in our review lastly the broad scope of our search terms may have served as a limitation in our study by including terms in our search strategy such as coping and cultural intervention as resilience alternatives we may have included measures that were too far from our initial overarching definition of resilience when referring to the results and conclusions drawn from the literature review in this study it is important to keep these limitations in mind future directions this review explored the extent of the literature on factors promoting resilience in indigenous youth in canada and the usa as noted indigenousspecific measurement of youth resilience is a nascent area and important future direction due to the general emphasis on truth and reconciliation it could be interesting to explore cultural resilience factors that can help indigenous youth who have had cultural fracturation due to foster care involvement this specific subpopulation of indigenous youth experiences a significant number of stressors and transitions and reunification with cultural factors could play a significant role in mediating some of the adverse coping mechanisms and behaviors acquired due to forced assimilation into colonization culture conclusion the literature included in this review reported several unique factors and strategies for resilience management in canadian and american indigenous youth by providing flexibility in definitions of resilience reviewed literature conveyed the complexity of defining measuring and predicting indigenous youth resilience despite experiencing a greater amount of stress than settler populations indigenous youth have many resilience strategies that they can draw upon to promote holistic health in supporting indigenous programming that promotes cultural learning youth leadership and relationship building organizations can promote indigenous youth and their communities resilience appendix search terms used in all database searches

relative to nonindigenous youth indigenous youth have been underrepresented when studying pathways to mental wellness yet a broad range of adversity is acknowledged from intergenerational and ongoing trauma arising from colonial policies this scoping review explores resilience definitions measures key stressors and what indigenous youth identify as pathways to their wellness based on quantitative and qualitative peerreviewed literature in canada and the continental united states eight databases ebsco psycinfo science direct social science citation index web of science psycarticles and embase and hand searches of 7 relevant journals were conducted to ensure literature coverage two independent reviewers screened each article with one indigenous screener per article the final scoping review analysis included 44 articles in articles no indigenous term for resilience was found but related concepts were identified walking a good path good mind grandfathers teachings on 7 values decisionmaking for 7 generations into the future etc few indigenousspecific measures of resilience exist with studies relying on western measures of psychological resilience qualitative approaches supporting youthled resilience definitions yielded important insights youth stressors included the following substance use family instability and loss of cultural identity youth resilience strategies included the following having a future orientation cultural pride learning from the natural world and interacting with community members eg relationship with elders being in community and on the land indigenous traditional knowledge and cultural continuity serve as prominent pathways to indigenous youth resilience more research is needed to yield a holistic youthcentered measure of resilience that includes traditional practices

introduction the five year forward view for the nhs in england calls for a radical upgrade in public health provision equitable access to general practice services will be crucial if the key objectives of reducing preventative illness and tackling health inequalities are to be met 1 2 3 there are a number of challenges demand for gp services has increased in the last decade 45 while the proportion of nhs funding allocated to general practice has fallen 6 one particular area of concern is in maternal health inequality 7 8 9 10 and the ways in which this may reinforce general patterns of inequality which have been proved to be remarkably persistent 11 12 13 14 so tackling maternal health inequality may be important for making a sustainable longterm difference to entrenched inequalities in the wider population 15 while maternity care is currently under review 1 gps are usually the first health care professionals that women go to when they discover they are pregnant and remain important throughout the subsequent years 1617 it is known that gp consultation rates are relatively high for economically disadvantaged and ethnic minority groups reflecting poorer health 18 19 20 21 and higher levels of maternal morbidity 2223 women from ethnic minorities and lower socioeconomic groups may also be less able to access health care as early as required 8 due to a deficit of gp provision in the most materially deprived neighbourhoods 24 25 26 as a result they may be accessing fewer preventative services and consulting gps at later stages of illness 2728 current gp funding does not take account of neighbourhood material deprivation though the government has suggested that this will happen as part of the promised new deal for gps 29 however there is still uncertainty and an ongoing debate about whether the gp deficit actually exists 30 31 32 with decisions currently being made about the future role and funding of primary care and maternity services there is a need for a clear understanding of current use of gp services by women in the years around giving birth in relation to inequalities in individual health and service provision the aim of this paper is to explore variation in gp consultation rates for women in the years around childbirth and to address three specific questions first are gp consultation rates higher for women in more materially deprived neighbourhoods and if so is this due to higher rates amongst economically disadvantaged and ethnic minority women living in these neighbourhoods secondly do economically disadvantaged and ethnic minority women or all women in materially deprived neighbourhoods have higher or lower consultation rates after controlling for differences in individual health lastly to what extent can variation in consultation rates be explained by differences in gp practices particularly the level of gp provision method this study uses data from the born in bradford birth cohort 12 450 women recruited at 28 weeks of pregnancy who gave birth at the bradford royal infirmary between 2007 to 2011 33 bradford may be considered a suitable focus for this research being a large multiethnic city with high levels of economic disadvantage and neighbourhood material deprivation 34 in 2015 the uk health secretary identified bradford as having one of the worst shortages of family doctors in england 35 cohort members gave their consent to access gp records via systmone which currently has a complete coverage of all gp practices in bradford in total 12 286 women 987 of the cohort were matched by nhs number surname and date of birth the outcome variable for this study was the number of general practice consultations recorded for each woman for a period of one year before giving birth to on average and five years after birth when more than one consultation was recorded on a single day this was treated as a single consultation to avoid double counting rates are expressed as consultations per person year the denominator being years registered with a gp practice during the study period cohort baseline records were used to identify ethnicity and derive a measure economic disadvantage equivalent to women in low income households or in receipt of means tested benefits 36 standardized counts of unique and repeat prescriptions taken from gp records were used as an indicator of individual health over the study period based on previous research suggesting this is a useful proxy for ill health 37 the charlson score for individuals was also calculated from gp records using read codes 38 data for bradford gp practices imd under 65 standard mortality ratio number of gps per thousand patients and the practice list size were obtained from the health and social care information centre 39 figure 1 shows the relationship between imd and the number of gps per thousand patients the time around childbirth is associated with relatively high levels of residential mobility 4041 and almost 4 in 10 women changed gp practice at least once in the study period therefore standardized gp scores weighted by the proportion of time in each practice were calculated for individuals standardized mortality ratios were not used in the analysis due to multicollinearity with gp practice imd average residential imd score over the study period for individuals was calculated in the same way finally a number of covariates potentially related to variation in gp consultations and ill health were derived from gp and cohort records these were age previous parity subsequent pregnancies in the period smoking status bmi country of birth and the number of gp practices registered with and different neighbourhoods lived in during the period a profile of the cohort is shown in table 1 economically disadvantaged and ethnic minority women were more likely to live in materially deprived neighbourhoods have a higher number of gp appointments and receive more prescriptions in particular pakistani women were more likely to be registered with gp practices in materially deprived neighbourhoods with higher mortality rates and fewer gps per thousand patients negative binomial regression models were employed 42 using stata 13 43 to estimate consultation rates for different groups based on neighbourhood material deprivation economic disadvantage and ethnicity first separately and then after adjustment for covariates next measures of individual ill health and gp practice level measures were introduced to predict adjusted estimates average marginal effects were calculated to aid the substantive interpretation of effect sizes 44 results table 2 presents estimated coefficients from the models and predicted consultation rates for certain groups are shown in fig 2 it is useful to consider the difference between gp consultation rates that are observed and gp consultation rates that are estimated after adjusting for individual ill health and gp practice variables model 1 estimates gp consultation rates for economically disadvantaged women women in materially deprived neighbourhoods and different ethnic groups separately model 2 estimates rates when these variables and covariates are considered together so model 1 and model 2 can be thought of in terms of what is actually observed in contrast model 3 which adds measures of individual health predicts adjusted consultation rates that would be observed if all women had the same levels of health model 4 adds gp practice measures and predicts adjusted consultation rates that would be observed if all women had the same levels of health and used gp practices with equivalent levels of provision it is the difference between these observed and adjusted rates that will inform the substantive interpretation of results first in relation to neighbourhood material deprivation and economic disadvantage and then in relation to ethnicity both neighbourhood material deprivation and economic disadvantage when considered separately in model 1 show a significant association with variation in gp consultation rates with higher rates for women in materially deprived neighbourhoods and for women who are economically disadvantaged figure 2 illustrates that those in neighbourhoods with high material deprivation are predicted to have an average of 640 consultations per year compared to 603 for those in neighbourhoods with low material deprivation economically disadvantaged women were predicted to have an average of 676 consultations per year compared with 546 for women not economically disadvantaged model 2 considers these measures in a single multivariate model along with covariates as discussed in the methods section and detailed in maternal health inequalities and gp provision table 2 neighbourhood material deprivation becomes nonsignificant while higher consultation rates are still predicted for economically disadvantaged women model 3 adds measures of individual health there is no longer a significant association between individual economic disadvantage and consultation rates suggesting that the observed higher consultation rates for economically disadvantaged women are as a result of this group having poorer health in model 3 neighbourhood material deprivation once again becomes significant but now predicted consultation rates are lower in more materially deprived neighbourhoods 610 per year compared to 643 for women with the same levels of ill health in neighbourhoods with low levels of material deprivation finally in model 4 after gp practice level variables are added the difference in gp consultation rates between individuals in neighbourhoods that have high material deprivation are no longer significantly different from those in neighbourhoods with low levels of material deprivation this suggests that there may be potential underuse of gp services in materially deprived neighbourhoods which can be explained by the number of gps per 1000 patients and the level of material deprivation where the gp practice is situated when ethnicity is considered in isolation in model 1 and together with other variables in model 2 pakistani women are predicted to have 696 consultations per year compared to 578 for white british women this being independent of socioeconomic status and neighbourhood material deprivation however in model 3 pakistani women are predicted to have lower consultation rates 609 than white british women 662 with the same level of ill health in model 4 when gp practice measures were introduced the differences in the predicted consultation rate between white british and pakistani women reduces and becomes nonsignificant this suggests that much of the difference identified in model 3 a neighbourhood imd and gp practice scores are averaged for individuals who lived in more than one lsoa and more than one gp practice in the study period potential relative underuse of gp services for pakistani women compared to white british women with the same levels of ill health can be explained by variation in available gp provision the observed consultation rates for women in the other ethnic group are high in model 1 and model 2 and in model 4 after controlling for individual health and gp practice variables they remain so as noted this group contains a range of different ethnicities including more recently arrived groups and so there may be less engagement with gps for groups that are less established in model 4 the largest substantive effects on the number of predicted consultations are individual health as measured by the proxy of prescription counts and measures related to the gp practice taking almost the full range of gp variable measures from two standard deviations below to two standard deviations above the mean consultation rates range from 546 a year for women in practices with the lowest gptopatient ratio to 714 for women in practices with the highest there is a difference of about one consultation a year across the range of imd values taking the most extreme situations women registered with gp practices that are in the most deprived neighbourhoods with the lowest gptopatient ratio are predicted to have 561 consultations a year compared to 793 for women with the same level of ill health registered with gp practices that are in the least deprived neighbourhoods with the highest gptopatient ratio discussion main findings of this study this paper sets out to investigate variation in gp consultation rates for women in the years around childbirth and answer three specific questions in relation to the first it was found that due to poorer levels of ill health economically disadvantaged women consult gps more frequently leading to high observed consultation rates in materially deprived neighbourhoods this is useful to know but perhaps not so surprising more novel insights were gained when considering the second and third questions after controlling for individual ill health it was found that women in materially deprived neighbourhoods had lower consultation rates than women with the same level of economic disadvantage and ill health who are not in materially deprived neighbourhoods also after controlling for individual health pakistani women who had high observed consultation rates independent of economic disadvantage or neighbourhood material deprivation were found to consult less than white british women with the same level of ill health this suggests a potential relative underuse of gp services for all women in materially deprived neighbourhoods and independently for pakistani women the answer to the third question whether variation in gp consultation rates could be explained by differences between gp practices was largely yes and this is an important finding after introducing gp practice measures it was found that there was now no significant difference in consultation rates for women in materially deprived neighbourhoods so the relative underuse of gp services in these neighbourhoods can be explained by the nature of gp provision the relative underuse of gp services by pakistani women when compared to white british women with the same levels of ill health was seen to be independent of economic disadvantage of neighbourhood material deprivation however as shown in table 1 pakistani women were on average registered with gp practices that were in more deprived neighbourhoods with fewer gps per thousand patients controlling for these differences in gp provision also explained the relative underuse of gp services for pakistani women what is already known on this topic observed gp consultation rates are known to be high for economically disadvantaged and ethnic minority groups reflecting higher levels of ill health 11 12 13 14 in particular women from economically disadvantaged and ethnic minority groups are known to have higher levels of maternal morbidity 2728 what is less clear is whether consultation rates for women with higher levels of ill health are high enough or whether these groups go to gps less often than other women with the same levels of ill health it has been suggested that women in materially deprived neighbourhoods report being least able to see healthcare workers quickly when needed 21 and that there is a deficit of gp provision in the most materially deprived neighbourhoods 15 16 17 however in general there is a lack of knowledge about how aspects of inverse care may operate in practice 33 and there are ongoing debates about whether such a deficit in gp provision exists at all 30 31 32 what this study adds by utilising measures of individual health and gp provision this study is able to identify that women in materially deprived neighbourhoods access gp services less often than women with the same level of ill health in neighbourhoods that are not materially deprived and further to suggest that these differences are in turn explained by the gptopatient ratio and level of material deprivation of gp practices that women are registered with this study also adds to existing knowledge of differences in gp consultation rates by ethnicity high observed rates for pakistani women obscure the fact that they are actually consulting gps less often than white british women with the same level of ill health pakistani mothers are registered with gp practices with on average poorer levels of provision and the relative underuse of gp services by pakistani women is also largely explained by these inequalities in gp provision results suggest that the inverse care law still exists in multiethnic urban england despite high observed consultation rates in materially deprived neighbourhoods there is still a need for more provision if public health objectives are to be met the results reinforce calls for change in the funding of gp services to take account of neighbourhood material deprivation limitations of this study one limitation may appear to be that differences in predicted consultation rates are relatively small however rates are presented per mother per year and the study period of interest covers one year before giving birth to five years after so it is useful to consider the cumulative effect over this period a difference of one or two appointments a year can amount to a substantive difference over the maternal period the use of prescription counts as a measure of underlying ill health was assumed to be valid based on previous research 28 but it would have been better to have been able to employ direct objective measures also the final model did not explain all the variation in consultation rates by ethnicity therefore it may be that further measures related to health seeking behaviours for different groups would have been useful to have access to and consider

background the five year forward view nhs england calls for a radical upgrade in public health provision inequalities in maternal health may perpetuate general patterns of health inequalities across generations therefore equitable access to general practice gp provision during maternity is important this paper explores variation in gp consultation rates for disadvantaged mothers method data from the born in bradford cohort around 12 000 women combined with gp records and gp practice variables were modelled to predict gp consultation rates before and after adjusting for individual health and gp provision results observed gp consultation rates are higher for women in materially deprived neighbourhoods and pakistani women however these groups were found to consult less often after controlling for individual health this difference around one appointment per year is explained by the nature of gp provision women in practices with a low gp to patient ratio had around 09 fewer consultations over the six year period compared to women in practices with the highest ratio conclusions equitable access to gp services particularly for women during the maternal period is essential for tackling deeprooted health inequalities future gp funding should take account of neighbourhood material deprivation to focus resources on areas of the greatest need

background nigeria has one of the highest rates of maternal mortality in the world 1 and accounts for 19 of the worlds total maternal deaths 2 reproductive maternal newborn child and adolescent health outcomes are poor in nigeria due to low coverage of health services such as antenatal care high unmet need for fp low rates of facilitybased childbirth poor quality of services and an array of inequities and inequalities 3 4 5 6 7 8 9 research in recent years has increasingly demonstrated that genderbased attitudes and practices of health providers and gender dynamics in health facilities contribute to issues of access and quality of rmncah care gender norms frequently expose women to early or forced marriage adolescent pregnancies unintended pregnancies and sexual or physical violence 10 these biases and norms include womens subordinate position within the home lack of control over household decisionmaking lack of money to pay for transport to distant facilities and lack of mobility outside the home without male permission or a chaperone 5 11 12 13 where women lack autonomy and mobility outside the home their access to safe adequate timely and affordable health services particularly emergency obstetric care is undermined 1415 these norms also influence whether or not people seek care and the quality and effectiveness of the care as the lancet series on maternal health identified gender inequality as a barrier to accessing highquality care noting that gender inequality influenced womens decisionmaking for seeking health care 1617 even when health services are available gender bias and harmful norms can lead to sexbased inequities in accessing services 18 a large fp program in six nigerian cities found that many nigerian health providers discouraged the use of contraceptives among women who were newly married because they believed that women should have children immediately after marriage providers often believed that people with small families should have bigger ones or that women should obtain the consent of their husband to receive contraception 19 in a 2018 study in south west nigeria providers encouraged young sexually active unmarried clients to abstain from sex instead of using a fp method discouraged women from using contraceptives and sometimes requested a husbands permission before providing a woman with contraceptives 20 increased rates of skilled birth attendance and facilitybased childbirth that meet basic quality standards are key to reducing maternal mortality and morbidity gender discrimination in health service delivery leads to poor quality care that can prevent women from visiting facilities even when health services are available 21 approaches to quality of care in lowresource settings have mainly focused on the clinical effectiveness of care but recognition of clients preferences and experience of care as central elements for improving the quality of personcentered health services is increasing 2223 the 2016 who quality of care framework for improving maternal and newborn health care emphasizes experience of care which includes respectful clientprovider interaction as a core dimension of quality of care and a key determinant of womens use of services 24 women are more likely to be poor than men in most societies and this status is an important driver of providers mistreatment of women during care which contributes to poor quality of care and potentially reduces womens subsequent utilization of care 9 mistreatment and abuse of mothers and newborns includes failure to meet professional standards of care poor rapport between women and providers 10 physical abuse nonconsented clinical care nonconfidential care nondignified care discrimination based on specific patient attributes abandonment or denial of care and detention in facilities 25 verbal abuse including shouting insulting or threatening a woman or her newborn as well as physical abuse such as slapping a woman or her newborn remain antiquated practices that violate the rights of patients and compromise the quality of care 2627 these harmful practices reinforce gender norms and are often normalized by both providers and clients 28 bohren et al conducted a study on mistreatment in childbirth in nigeria in 2017 and found that women reported experiencing or witnessing physical abuse including slapping physical restraint to a delivery bed and detainment in the hospital and verbal abuse such as shouting and threatening women with physical abuse some women were forced to give birth on the floor unattended by a provider 21 women in lowand middleincome countries frequently choose not to give birth in health facilities because prior experiences of mistreatment and health facilities poor reputations have eroded their trust in the health system 21 a study in enugu state in south east nigeria found that utilization of services is largely determined by womens perceptions of the quality of care that will be received specifically provider behavior 29 other studies in nigeria also found that the key reasons women said they did not use facilitybased maternal and child health services were poor provider attitudes 5 and perceived provider biases based on age marital status parity and socioeconomic status such attitudes and biases can result in restricted services and skewed provision of information 30 on the other hand growing evidence suggests that positive male engagement in rmncah can improve access to services quality of care and health outcomes the united states agency for international development qualifies positive male engagement as the involvement of men and boys across life phases in family planning sexual and reproductive health maternal and child health and hiv programs as a clients users b supportive partners and c agents of change to improve health and gender equality outcomes actively address power dynamics and transform harmful masculinities engaging men and boys also includes broader efforts to promote equality with respect to sexual relations caregiving fatherhood division of labor and ending gbv 31 increased male participation in rmnc ah that promotes couples communication equitable joint decisionmaking and gender equity can also lead to greater uptake of modern fp methods anc services hiv testing and treatment facilitybased childbirth breastfeeding housework and childcare sharing and child immunization 32 33 34 35 36 the world health organization recommends the presence of a labor and birth companion of choice if desired by a woman as a core element of care to improve labor outcomes and womens satisfaction with care 3437 a 2013 cochrane review found that supportive companionship increased the likelihood of vaginal births reduced the need for pain medication shortened labor and improved newborn apgar scores 38 finally health providers also experience gender discrimination and violence that can impact the delivery of care violence toward health providers in their personal lives from clients or from others in the health workplace is not uncommon who estimates that between 8 and 38 of health providers worldwide suffer physical violence at some point in their careers nurses are most at risk a 2012 study on workplace violence against health providers in abia state found that 881 of health providers had experienced workplace violence 39 violence not only impacts the psychological and physical wellbeing of health providers but also affects job motivation and compromises the quality of care they deliver 40 in a landscape analysis of disrespect and abuse in facilitybased childbirth bowser and hill noted that the perspective of the women who provide that care however has remained virtually absent from the discourse 25 filby et al point to the violence and poor working conditions midwives encounter as a driver of moral distress burnout poor retention and poor quality of care 41 for efforts to improve rmncah outcomes in nigeria to succeed the impact of gender on access to care and quality of care must be understood and addressed a gender perspective is necessary to understand health facilitylevel factors that deter women from seeking facilitybased care 4243 purpose of the study harmful gender norms can reduce womens ability to obtain health care influence how health providers treat women and exclude men from reproductive health for example norms that dictate a woman must obtain permission to seek care for herself or children that restrict womens ability to make decisions about their reproductive health or those that prevent men from participating in equitable jointdecision making around health care can lead to poor health outcomes these norms can also subject health providers to violence and poor working conditions that in turn impact the quality of service delivery evidence shows that when clients experience poor treatment in health facilities they are less likely to use contraceptives deliver in a health facility seek care for sick children or use other health services this perpetuates maternal and newborn death and disease programs that focus on rmncah typically focus on women and girls these programs may examine health conditions associated with womens reproductive roles but often fail to consider the unequal gender dynamics that characterize health service delivery and produce poor health outcomes for women and girls they also often miss how womens subordinate roles within households communities and societies contribute to negative health behaviors and outcomes additionally programs may not consider how womens health is impacted by the unequal division of labor allocation of resources decisionmaking caregiving or mobility outside the home this study was conducted at baseline to inform the focus and program design of an integrated maternal and child health project in kogi and ebonyi states supported by the usaidfunded maternal and child survival program mcsp in nigerias goals included building the capacity of health care providers to address gender attitudes dynamics and disparities in service delivery in the pursuit of more equitable maternal and newborn health outcomes among other aims the study sought to assess whether or not gender plays a role in access to use of and delivery of health servicesand if it does how in this study we define gender dynamics as relationships and interactions among girls boys women and men gendersensitivity in this context refers to providers knowledge attitudes practices and beliefs about gender equity that take into account gender differences in access to health information service delivery and health outcomes providers knowledge of rmncah was assessed using structured interview guides with genderspecific questions 24 instances of unequal or disadvantageous treatment of clients on the basis of gender that were reported during interviews or observed during anc consultations and l d were considered gender discrimination earlier studies recommended considering gender barriers while designing implementing monitoring and evaluating interventions to ensure program objectives are achieved and that efforts do not create unintended consequences particularly for women and girls 4445 hence a gender analysisa systematic methodology for examining how differences in power relations result in differential risks exposures vulnerabilities and outcomes in health for men and womenis required 46 the gender analysis within this quality of care assessment sought to answer the following research questions and were categorized into the following domains from usaids gender analysis framework 4446 methods study setting and design the baseline quality of care assessment was a crosssectional health facilitybased study which examined service providers knowledge skills and genderrelated beliefs practices and policies with respect to anc services labor and vaginal deliveries and fp services study instruments included the following anc observation checklist l d observation checklist fp consult observation checklist and a maternal and newborn health service provider interview guide and knowledge test for providers who offered anc and l d services clinical observations of clientprovider interactions were conducted by trained practicing clinicians who directly observed care in realtime while using structured standardized observation checklists the checklists were developed and used by usaids maternal and child health integrated program based on whorecommended evidencebased practices for anc and l d care 47 the structured provider interview and knowledge test was a verballyadministered quantitative tool that primarily included closeended questions but also a few openended questions on the following topics provider background charateristics and work environment knowledge of evidencebased maternal and newborn health interventions experience with violent and disrespectful treatment and genderspecific atttitudes and beliefs that can affect client care 24 the anc checklist and provider included questions from the service provision assessment which has been widely used in lowand middleincome countries 48 sampling methodology and sample characteristics samples were drawn from different units of the health facilities including the maternity antenatal and fp units with clustering of data by facility a total of 40 health facilities targeted to receive quality improvement interventions in the first phase of mcsp implementation were purposively selected from a larger list of 120 health facilities in kogi and ebonyi states that were identified in consultation with the state ministries of health to receive support from mcsp the study was powered based on the number anc consultations to be directly observed for observations of labor and delivery care the plan was to observe all deliveries during the days of the study teams visit because of the low caseload of deliveries in most of the facilities based on an assumption of 220 working days per year anc data extracted from registers of the selected health facilities indicated a combined average of 197 and 170 anc visits per day in facilities in ebonyi and kogi respectively the desired sample size of anc consultations to be observed was based on cluster sampling calculations with a median design effect of 15 to allow 12 precision in quality of care indicator estimates the assumed prevalence for the quality of care indicators of interest was set at 50 to generate the most conservative sample size with approximately 200 anc consultations planned to be observed in each state target sample sizes were distributed across facility types based on identified anc caseloadsproportional to size since more services took place at the tertiary level the protocol planned for the observation of 20 anc consultations in the tertiary facility 12 consultations in each of the general and mission hospitals and 5 consultations in each of the primary health centers and private clinics current national standards require that a minimum of four service providers work in the maternity unit of a facility to operate a shiftduty system therefore based on an estimated minimum population of 160 eligible service providers a 5 margin of error and a 95 confidence interval we planned to interview 136 anc and labor and delivery providers data collection procedures twentytwo obstetricians pediatricians medical officers nurses and midwives were selected as data collectors for all the study tools based on their active clinical practice and data collection experience all data collectors received 2 weeks of training that included a briefing on the background and rationale of the study an overview of the study instruments and informed consent process and orientation on all data collection tools including genderrelated aspects of the observational and interview tools and technical instructions for using commcare technology the mobile software used for data collection data collectors were trained on gender terms and to review records for missing or inconsistent answers before submission data collectors practiced using the study instruments in the classroom with colleagues during role plays and clinical simulations using anatomic models and interrater reliability of the observers scores was tested field tests using the tools were conducted over 2 days in five health facilities in kogi states and feedback was used to revise the tools and reword questions as necessary data collectors worked in teams whose staffing was based on the number of observations to be made and classifications of the health facilities data collection lasted 12 days in primary health centers and 24 days in larger secondary and tertiary health facilities repeat visits were made to complete the target number of anc observations if needed repeat visits were required more frequently in tertiary health facilities and general hospitals supervisors visited data collection teams to provide ongoing quality control data were collected in kogi and ebonyi states from 1 april through 30 june 2016 and entered directly on androidenabled tablet pcs using customcreated data entry programs developed with the passwordprotected commcare software package technical and information technology staff monitored data sent to the commcare hq online site and verified data completeness and accuracy data analysis data were exported from commcare to excel before being converted to spss for cleaning and analysis data analyses performed included percent distributions counts means medians and crosstabulations responses to openended questions from the provider interview were collated and summarized by theme results for kogi and ebonyi states were analyzed separately due to significant sociocultural and normative differences in gender and health practices for example 742 of women in ebonyi state have undergone female genital mutilation compared to 17 of women in kogi state 1 descriptive gender analysis was used to answer the gender assessment questions of the quality of care findings gender analysis emphasizes the importance of examining not only supplyside issues in health service provision but also demandside issues and the interrelation of the two 42 gender analysis can reveal the complex interplay of gender inequality and other inequities that constitute barriers or facilitators for access to health services and providerclient interactions it can also provide baseline information about providers knowledge attitudes and practices around gender during rmncah service delivery and uncovered genderrelated barriers that hinder the provision of quality respectful and equally accessible health care a descriptive analysis of genderspecific quality of care findings was conducted using usaids gender analysis framework 4446 to examine genderbased constraints and opportunities in four domains practices roles and participation beliefs and perceptions access to assets and institutions laws and policies results sample characteristics twentysix facilities were hospitals and 14 were lower level clinicshealth centers although the majority of the providers were female 40 of the supervisors were male most providers were between the ages of 3059 as shown in table 2 overall findings the results of the assessment are categorized according to the gender analysis framework domains that relate to quality of care most strongly beliefs and perceptions practices roles and participation and institutions laws and policies beliefs and perceptions this domain includes gendered norms such as attitudes and beliefs about what it means to be a woman or a man in a specific context beliefs and perceptions affect a persons behavior participation dress and decisionmaking capacity 10 observation of anc consultations and interviews with providers revealed that genderinequitable attitudes toward service provision are prevalent where 98 of providers agreed that men should be involved in rmncah services but only 10 asked women if they wanted their partner to participate in anc providers had deeprooted patriarchal beliefs and perceptions about gender womens autonomy and genderbased violence hence information on genderbased violence or referrals to gbv services were not offered at all providers held contradictory beliefs that women were responsible for pregnancy childbirth and childcare but that men should be the primary decisionmakers controlling whether women seek care including whether or not to use contraceptives as only about 3 of pregnant women were asked about who the decision maker will be for labour and delivery the study also showed an acceptance by providers and clients of practices related to mistreatment of women and their newborns during facilitybased care as about 516 providers engaged in at least one harmful practice during labour and delivery ninetyfive percent of providers agreed or strongly agreed that every woman who visits the facility should be given the same quality of treatment irrespective of whether she has a companion still 42 of providers disagreed strongly disagreed or were neutral that women without accompanying partners should be treated the same way as any other patient in ebonyi state 676 of healthcare providers disagreed or strongly disagreed that a woman should be able to choose a fp method on her own compared to 507 of providers in kogi state providers also held moralistic beliefs about contraceptives and premarital sex in both states combined 232 of providers disagreed that unmarried clients should use fp practices roles and participation this domain includes roles and responsibilities that are traditionally expected of men and women which are influenced by gender norms and beliefs 10 the majority of gendered practices related to patientprovider interactions and how patients were treated by providers other issues concerned experiences of violence by both clients and health providers across both districts the majority of health providers strongly agreed or agreed with the statement both male and female clients deserve to receive services without violence the majority of anc providers observed greeted clients in a friendly and respectful manner however few providers asked clients if they would like their husbandpartner to participate in anc consultation respectful maternity care findings for women in labor were mixed during the initial client assessments for women in labor the majority of clients were respectfully greeted by providers however only 45 of at least one potentially harmful practice such as applying fundal pressure to hasten delivery of baby or placenta was performed during delivery in 596 of encounters and at least one disrespectful or abusive practice was observed in 340 of encounters across ebonyi state and kogi states episiotomies were performed in at least onequarter of the observations across the two states institutions laws and policies this domain includes the ways in which women and men are dissimilarly affected by institutional structures policies and rules both within the health system and beyond and includes considerations of formal and informal rights 10 violence directed toward health providers is included within this domain as it occurs at the institutional level must be addressed at the institutional level and can affect the care patients receive seventyeight percent of providers had received no training on gender genderbased violence or human rights in the last 3 years fewer than half of providers in ebonyi and kogi reported that their facilities were equipped to allow for the presence of a birth companion through ensuring visual privacy in the delivery ward most facilities were open wards where multiple women delivered without a wall curtain or other visual barrier as a result men who accompanied their partners for l d were often not allowed inside the labor or postnatal wards to act as supportive companions the majority of providers did not allow women to choose their delivery position supine dorsal or lithotomy positions were permitted but women were unable to deliver in a nonhorizontal position while the majority of providers interviewed believed that they were treated respectfully in the facility 8 of providers across the two states reported that they or a colleague had experienced at least one form of violence by a colleague or supervisor violence in the workplace was more frequently reported among health providers in ebonyi state than kogi state no experiences of sexual violence were reported in kogi state but 14 of the female health providers in ebonyi state reported being physically forced to have sexual intercourse or perform other sexual acts while on the job providers were not asked about whether the violence was perpetrated by coworkers supervisors or clients physical violence was reported to occur more frequently in the workplace in ebonyi state than in kogi state fig 2 providerreported incidence of violence against themselves or other providers in the workplace fig 3 providerreported incidence of violence against clients in the health facility by providers sixtyseven percent of providers also reported high rates of experiencing observing or hearing of at least one incident of violence against clients discussion gender age and marital status should not affect the right to receive highquality gendersensitive and respectful services when seeking anc and l d care or other health services such as family planning yet gender norms embedded in sociocultural practices persist and drive providers poor attitudes perpetuate violence limit the utilization of facilitybased services and contribute to poor rmncah outcomes 56 it is worth noting that age and sex clearly did not show any remarkable difference throughout the study as beliefs and practices seem to cut across age and sex of female providers and the male providers and between older and younger providers as 739 of providers interviewed were women while over 70 were aged 4059 years apparently the belief systems and practices found in the study indicates social acceptance and cuts across the two genders the current findings have implications for designing interventions to help improve the provision of gendersensitive and respective care program planners must be intentional about addressing and measuring inequalities as well as improving quality respectful care beliefs and perceptions virtually all healthcare providers surveyed in both states agreed that men play a role in maternal newborn and child health this is consistent with previous findings from hospitals in nigeria where midwives acknowledged the benefits of having a partner present for example contributing to pain relief during childbirth 49 previous studies have found that engaging men in reproductive maternal and newborn health can increase care seeking improve home care practices and support more equitable communication and decisionmaking among couples related to maternal and newborn health 136 despite this recognition facilities did not have adequate privacy in the l d and postpartum wards to enable men to attend l d and did not allow or encourage men to participate at the same time the finding could imply that many providers believe the man should be the decisionmaker about a womans reproductive health given that providers subsequent responses prioritized mens decisionmaking authority over womens reproductive autonomy however as a reflection of gender norms that prioritize mens power in decisionmaking most providers did not think women should have autonomy in fp decisionmaking676 of providers interviewed in ebonyi state and 507 in kogi state believed that a woman should not choose a fp method on her own even though multiple studies have shown fp to be generally accepted as womens responsibility 50 in kogi and ebonyi states providers believed the decision of whether or not to use fp should be made by the man or by the couple together and the woman should be responsible for implementing fp decisions a previous study in nigeria found that men often think that women should take responsibility for using contraception but that men should control the decisionmaking 51 these perspectives may be at odds with current programs in nigeria that direct fp awareness raising toward women alone excluding men given that nigerian couples often do not discuss fp 52 and that men typically do not participate in fp consultations providers also held discriminatory beliefs about who should be allowed to use fp beliefs were based on culture gender and religion rather than medical need or client preference according to the demographic and health survey women and men in nigeria tend to initiate sexual activity before marriage approximately onethird of women in ebonyi and in kogi had sex before the age of 18 but the median age of marriage for women in nigeria was 181 1 our study found that 232 of providers did not think unmarried clients should use fp services a study in ibadan oyo state nigeria found that 575 of providers believed that unmarried adolescents should be told to abstain from sex rather than be provided with contraceptives which they believed would promote sexual promiscuity providers also believed that contraceptives should not be provided to adolescents whether married or unmarried 53 another program in nigeria found that providers turned away unmarried clients newly married couples or couples with only one baby from fp services based on personal beliefs that unmarried clients should not be having sex and that newly married couples should begin childbearing right away to produce large families 19 practices roles and participation as in many health settings globally we found that the majority of health providers were female but the majority of supervisors were male 1041 this relative exclusion of women from equitable leadership positions could be due to a number of factors including discriminatory attitudes about womens ability to be managers a lack of gendersensitive workplace policies such as breastfeeding rooms and parental leave and sexual harassment and violence these factors have been shown to lead to burnout attrition mistreatment of patients and the delivery of poor quality health services 10 birth preparedness counseling observed during anc consultations revealed low levels of interaction and engagement between providers and clients women were inadequately informed about the status of their pregnancy and their options for childbirth which may reflect providers bias about womens agency and dignity over onethird of respondents reported having experienced observed or heard of at least one incident of violence or mistreatment against clients this included being yelled at threatened or ignored by facility staff and in a minority of cases being punched kicked dragged or beaten mistreatment of women in labor is common in many rmncah service delivery settings 6 our study observed no occurrence of slapping hitting or pinching clients during or after labor in either state however potentially harmful practices were observed for example routine episiotomies that are not required signify acts of mistreatment 54 our findings are consistent with an earlier study that found womens perception of quality of care was lowest related to respect for clients 55 institutions laws and policies enhancing privacy during care was a genderbased constraint to accessing highquality rmncah care our study found that only 36 of facilities were equipped to accommodate male birth companions due to limited privacy despite the recognition that engaging men in maternal and newborn health is beneficial 136 even if men wanted to accompany their wives facilities were unequipped to allow men to do so while maintaining the privacy of other clients study strengths and limitations this was a smallscale crosssectional study that included direct observation of antenatal and labor and delivery care the gold standard for understanding quality of care and interviews with health care providers to inform programmatic activities that strengthen the quality of rmncah service delivery observations were limited to anc consultations and and births that occurred on the days data collectors were present the final number of l d observations was small due to low caseloads therefore the margins of error are wide however the study was not designed to be representative of the entire country but to provide baseline data within the two states to inform local project design another limitation is that it was unfeasible in this study to track specific providers knowledge attitude and practives also the sex and age of providers were not specifically compared with their beliefs and practices given that health service providers across nigeria operate under similar conditions and that the gender norms present in our study exist throughout nigeria we believe that the findings of this gender analysis can effectively inform gender integration for maternal and newborn health programming across the country providers may have delivered care differently because they were under observation resulting in underreporting of gender discrimination or mistreatment in care social desirability bias may have impacted providers interview responses another limitation of the study stems from the sensitivity towards terms such as gender genderbased violence disrespect and abuse or mistreatment among providers in nigeria these terms were included in the survey instruments and potentially affected responses from providers because these terms may have elicited negative reactions particularly for questions regarding workplace gender dynamics widespread conflation of the term gender with womens issueswhich are often dismissed as a western imposition a modern fad an attack on mens rights an attack on traditionculturereligion or an accusation that all men are badmay have influenced respondents interpretations of the term some respondents may have not understood what was meant by gender within the study additionally some types of violence may not have been considered violent by respondents due to the high acceptance of violence against women and the culture of silence surrounding genderbased violence in nigerian society further validation of the study tools would have helped to limit misinterpretation recommendations genderdiscriminatory beliefs and practices identified in our study hold farreaching implications for the ability of women to make selfdirected decisions about rmnc ah genderdiscrimination negatively impacts the ability of providers to deliver gendersensitive care that respects womens human rights dignity and bodily autonomy 19 for rmncah programming in nigeria to be successful programs must meaningfully engage men women and community leaders in awareness raising in ways that respect womens reproductive autonomy agency and rights and efforts must go beyond just the benefits of healthy timing and spacing of pregnancies and limiting family size capacity building of providers as well as health facilitys and national policies should reinforce that health service delivery should not be influenced by morals gender biases or religion but should focus on medical needs client preferences and evidencebased approaches to care our findings indicate an opportunity to improve reproductive health outcomes and leverage couples counseling to mitigate power imbalances between men and women around fertility and encourage women to participate in joint decisionmaking in order to transform perceptions of rmncah services from being solely a womans issue to a joint endeavor between couples 23 previous studies 1656 recommended the creation of a supportive and malefriendly environment at health facilities that encourages men to be involved in maternal health services 22 further interventions are therefore needed at the institutional level to ensure that men are able to accompany their partners to l d including creating private l d and postpartum spaces within health facilities sensitization training and guidance for health providers on how to engage men along the rmnch continuum such capacity building guided by a 2018 gender capacity building framework for providers 57 can improve providers ability to counsel men and couples and advocate for facility preparedness to engage men in pregnancy and childbirth such efforts however must ensure that attempts to engage men do not infringe upon womens reproductive autonomy by encouraging men to take control of reproductive health decisionmaking instead they should increase and uphold womens agency selfefficacy and decisionmaking power health providers were identified as having a key role in changing the negative effects of harmful gender norms and stereotypes by empowering both women and men to make informed choices about their health a study on improving reproductive health outcomes stover et al highlighted the importance of creating opportunities for providers to clarify personal values and offer services in a nonjudgmental way to meet clients reproductive health needs 58 there are not many rmncah interventions which address gender as a determinant of mistreatment during maternal and newborn health care 10 interventions include provider trainings to clarify values and transform attitudes in order to facilitate understanding of genderdiscriminatory behaviors and attitudes which influence mistreatment during labor and childbirth 60 these can be part of wider efforts to engage policymakers to focus on mistreatment during labor and childbirth and to support accountability by strengthening community and health facility linkages putting in place systems to gather patient complaints and feedback and developing patient charters at the facility level 10 interventions that support a positive work environment for health providers are also needed for example the heshima project in kenya worked at the community facility and policy levels to examine the extent and causes of mistreatment in care in kenya and designed and implemented interventions to promote respectful care 61 mcsp provided recommendations to the nigerian moh including a scale up of the health workers for change curriculum capacity building and ongoing mentorship on gendersensitive service delivery male engagement and couples counseling and firstline support to survivors of gbv mcsp also recommended a scale up of efforts to improve infrastructure for privacy in l d and postnatal wards in health facilities conclusion our study identified several rmncah quality of care issues affected by gender inequalities and harmful norms in kogi and ebonyi states we found that some providers upheld harmful traditional gender norms that did not respect womens right to make decisions about the use of contraceptives or health services anc providers did not offer services to survivors of sexual assault or intimate partner violence or encourage men to participate in health care for themselves their partners or their families some health providers who were observed mistreating clients and their newborns reported they were subject to disrespect and abuse themselves including experiencing workplace physical and sexual violence these findings point to the need to train providers and address attitudes and conditions within the health system that perpetuate gender discrimination and discourage women and men from seeking and using potentially lifesaving care also these findings can inform the development of gendertransformative interventions and measurement approaches to address and assess the impact of harmful gender norms and practices as well as power imbalances between men and women on service delivery integrating gender into the design of interventions and capacity building efforts is key to improving quality of services gender analysis remains a critical step in identifying genderbased constraints and opportunities empowering women involving men transforming service providers negative attitudes and encouraging respectful care are critical approaches to promote better utilization and quality of maternal health services and ultimately to improve maternal and newborn health outcomes 326263 by identifying and addressing the influences and unintended consequences of gender discrimination in health service delivery providers facility managers and stakeholders in health systems can improve countries progress toward universal health coverage and the attainment of national and global goals such as the sustainable development goals competing interests the authors declare that they have no competing interests

background poor reproductive maternal newborn child and adolescent health outcomes in nigeria can be attributed to several factors not limited to low health service coverage a lack of quality care and gender inequity providers genderdiscriminatory attitudes and mens limited positive involvement correlate with poor utilization and quality of services we conducted a study at the beginning of a large family planning fp and maternal newborn child and adolescent health program in kogi and ebonyi states of nigeria to assess whether or not gender plays a role in access to use of and delivery of health services methods we conducted a crosssectional observational baseline quality of care assessment from apriljuly 2016 to inform a maternal and newborn health project in health facilities in ebonyi and kogi states we observed 435 antenatal care consultations and 47 births and interviewed 138 providers about their knowledge training experiences working conditions gendersensitive and respectful care and workplace gender dynamics the united states agency for international developments gender analysis framework was used to analyze findings results sixty percent of providers disagreed that a woman could choose a family planning method without a male partners involvement and 232 of providers disagreed that unmarried clients should use family planning ninetyeight percent believed men should participate in health services yet only 10 encouraged women to bring their partners harmful practices were observed in 596 of deliveries and disrespectful or abusive practices were observed in 340 no providers offered clients information services or referrals for genderbased violence sixtyseven percent reported observing or hearing of an incident of violence against clients and 79 of providers experienced violence in the workplace themselves over 78 of providers received no training on gender genderbased violence or human rights in the past 3 years

background changing patterns in global climate have resulted in growing awareness that natural disasters will probably increase in the coming years resulting in more bushfires severe storms and flooding that can pose a threat to individual and social wellbeing 1 for example bushfires and other hazards are expected to present an increased threat to australian communities over the coming years with more days with a high risk of fire expected as a result of climate change 23 the catastrophic bushfires of february 2009 including the black saturday fires of february 7 led to tragic loss of life and farreaching damage to the landscape and physical infrastructure one hundred and nine communities selfidentified as being impacted by bushfires there were 173 fatalities 3500 buildings damaged or destroyed and a significant assault on the social infrastructure within communities 4 in order to progress future preparedness response and recovery it is crucial to measure and understand the impact of disasters at both individual and community levels there is converging evidence that massive disasters contribute to impaired mental health and social disruption 56 however our current knowledge base is very limited by several factors that impede optimal preparation to respond to the health and wellbeing consequences of a disaster first there is an urgent need to examine further the interrelated factors that generate recovery following disaster to date research has focused either on the mental health functioning of individuals 7 or economic impacts this approach has been limiting because disasters by definition affect individuals within a broader social context and therefore full understanding of the nature of disaster response requires that both individual and community factors must be studied in concert second the majority of disaster research has focused on the relatively shortterm effects of disaster 7 8 9 this is a major limitation because impacts may be experienced over long periods of time as social networks respond to are reestablished and evolve following a disaster for example evidence following hurricane katrina demonstrated that mental health functioning deteriorated markedly at longerterm followup assessments arguably as social and infrastructure support was not available 10 third most disaster research has attended to adult survivors with a relative neglect of children and adolescents let alone combining a focus on adults children and young people in the same study this is a critical issue because indirect evidence suggests that distressing events may impact on developmental progress in younger people which can only be properly studied through longitudinal study over the course of years 1112 fourth most disaster research focuses solely on specific pathogenic impacts of trauma and their associated risk factors accordingly risk is typically treated as an additive combination of sociodemographic variables 9 rather than as systems of ongoing social arrangements which might be amenable to populationlevel intervention while such combinations of risk factors may help to predict with whom pathology is likely occur they do not explain how the pathology arose in the first place or how its presenceabsence contributes to a larger picture of an individuals wellbeing ultimately the critical link between trauma and resilience is left underexamined this paper presents the protocol for the beyond bushfires community resilience and recovery study in the wake of the victorian bushfires in 2009 this study brings together academic community health government and emergency response organisations to address each of the aforementioned limitations in the evidence the study will consist of longitudinal mixed method analyses of social connectedness mental health functioning and wellbeing in affected and unaffected areas in people of all ages importantly it will identify the major community family and individual factors that will enhance adaptation following future disasters the complexity of the term community is recognised 13 it is used in this paper to refer to predominantly geographically bound localities but also includes those residents who have relocated since the february 2009 bushfires 14 a multidisciplinary approach will account for the interacting social determinants of health and wellbeing postdisaster the development of the protocol has thus required consideration of study methods that bridge paradigms and scientific disciplines and requires that the varying nature of the data generated are able to be cross referenced and speak to each other allowing for more integrated findings a partnership approach with government and agency partners ensures inclusion of policy and service delivery expertise an ethnographic approach involving ongoing community liaison will also allow for inclusion of community expertise and contextual information in the development of study design methods and measures and interpretation of findings these multisectoral contributions will continue throughout the study aims the goal of this study is to support the development of evidencebased strategies for promoting mental health wellbeing and social inclusion of individuals and communities in regions affected by disasters the study aims to achieve this by identifying patterns of individual and community recovery from the recent bushfire disaster in victoria and factors that enhance recovery over a period of 38 years postbushfire we will work closely in partnership with government industry and community partners to describe individual recovery trajectories in terms of mental health wellbeing and social connectedness increase understanding of individual social needs and the role of social networks in supporting resilience at individual and community levels increase understanding of the particular needs of children and adolescents identify individual and community predictors of recovery from disaster theoretical framework this study will be conducted within a socioecological theoretical framework which recognises the proximal and distal influences on individual health and health behaviours as well as the interdependence between individual cognitive and behavioural processes and societal factors on psychological and health outcomes 15 it will therefore draw on both cognitive and behavioural models as well as theories of social capital and social network analysis to characterise these interdependencies in terms of relationships within and across groups in community settings 16 17 18 19 20 21 a community based participatory approach will be employed that involves the partner organisations community members and local government as active partners throughout the research process to ensure the relevance and sensitivity of the study as well as translation of study findings into policy service and community outcomes 2223 this approach directly accords with the national principles for recovery and recognition following the victorian fires of the priority that needs to be given to community engagement in the recovery and reconstruction following a disaster 24 methodsdesign a mixed method longitudinal study will be conducted to increase understanding of the impact of community members bushfire experiences their recovery needs and how individual and community adaptation shifts over time the methods include an ethnographic approach epidemiological and social network surveys indepth qualitative interviews and focus group discussions the study aims to achieve its goals through progressive individual and community measurements over a fiveyear period in the first instance our expectation is that we will continue to collaborate with these individuals and communities beyond the funded fiveyear period of the study study location selection of victorian rural communities to be invited to participate in the study was determined according to a purposive sampling model to capture a diversity of experiences as represented by a range of variables this included level of impact from the february 2009 fires and demographics as indicated by the seifa index of relative socioeconomic advantage and disadvantage from the australian bureau of statistics 2006 census a community selection variables also included population size region and distance from melbourne community visits were conducted to determine if there was local support for the study to sustain a partnership approach and to check the proposed boundaries for local relevance as a result 26 communities in 10 locations in victoria were identified as participating communities sample and recruitment the study aims for saturation sampling within participating communities to meet methodological requirements of both the epidemiological and social network components of the study all adults adolescents and children currently living in the selected communities or who were living in those communities at the time of the 2009 fires will be eligible and invited to participate in the study the 2006 census data indicated a total population of 9792 in the selected communities including adults adolescents and children aged 4 and above the sample for this study will be obtained using contact details gathered by the victorian electoral commission in order to be able to identify the contact details of both current residents and those who have relocatedapproximately 7500 adults in total a personalised letter of invitation will be sent to the adults in this sample children between the ages of 5 and 18 will also be eligible for participation in the study subject to parent approval additional community awareness news media and social media activities will also be conducted to ensure eligible participants are aware of the opportunity to participate in the study consent parentscaretakers will provide consent for children and will complete the survey on their behalf children who are invited to participate in interviews or focus group discussion will be asked to provide verbal consent in addition to their parents written consent adolescents will be sent a letter of invitation to participate subject to parentcaretaker consent and will then provide their own consent data collection the various methods being employed that is an ethnographic approach epidemiological and social network surveys indepth qualitative interviews and focus group discussions will require different data collection processes as detailed below the qualitative components of the study will adhere to the rats guidelines on qualitative research community visits in keeping with the ethnographic approach of the study ongoing community visits were conducted in the developmental stages of the study and will continue throughout initially these were conducted to establish community contacts as a means of information exchange recognising community groups and members as the source of valued onsite community expertise and a connection with local information networks to support study information dissemination the input received on the community visits helped in establishing the study name terminology and branding the boundaries of the selected communities the recruitment and data collection methods and the survey content the stories being shared by community members with the researchers also provide critical contextual information which will inform the qualitative components of the study data collection services a company has been employed to conduct quantitative data collection using computer assisted telephone and web based surveys on behalf of the university this arrangement is subject to strict privacy and confidentiality guidelines survey the survey instrument will be administered where possible existing scales were used within the survey however due to the unique aspects of the study in some cases it was necessary to develop new questions for inclusion adapted versions of the survey were developed for adolescents for self completion and for children school age for parent guardian completion preschool children are not eligible for the study as they would have been babies or not born yet when the fires occurred the adult and child surveys were piloted first to ensure comprehensibility and acceptability as part of the pilot phase involving two of the selected communities as no adolescents were recruited in the pilot phase the adolescent survey was only able to be piloted for comprehensibility with adolescents known to the researchers and not from bushfire affected areas survey data will be collected via an online survey or a telephone interview that will take approximately forty minutes for completion the mode of survey administration that is by telephone interview or online will be determined by participant choice potential for distress in recognition of the potential for distress triggered by participation in the study information will be provided to all participants about support services available to them including 24 hour options a suicide protocol and an abuse protocol have been developed in consultation with the australian centre for posttraumatic mental health in the unlikely event that risk of either emerges during the course of data collection interviews and family focus groups a subsample of adults adolescents and children will be invited to participate in indepth individual or group interviews in 2013 this component is being included to increase understanding of recovery experiences from the perspective of the participants and to identify any recovery issues not being captured by the structured measures purposive sampling will be used initially to seek a diversity of experiences as themes emerge from the analysis further sampling may occur to allow confirmation of findings or to clarify disconfirming evidence these interviews will include a walking tour of the local area with the participants leading the researcher and use of a photo description and ordering approach to explore and identify significant local places and activities and to build an understanding of attachment to community generally for those who are comfortable engaging in bushfire related discussions we will also discuss how this attachment to local spaces has been affected by the impact of bushfires and recovery activities this methodology has been specifically developed to be suitable for children and young people 25 walking tours and photoelicitation techniques have been found to be effective and nonthreatening in discussions with children refugees and participants with limited language skills 26 27 28 these methods have also been successfully trialled in developing countries to index childrens perceptions of a traumatic event and its aftermath and to involve them in disaster risk reduction planning 29 the existing connections with community groups will also provide an opportunity to discuss and build on the understandings developed to identify other groups or individuals who could make a contribution to the study and to monitor shifts in the issues being experienced in communities as time passes analyses the study will integrate the strengths of two quantitative research paradigms with qualitative thematic analyses all of the study partners will be involved in the interpretation of the findings to ensure that different perspectives are considered and understood structural equation modelling apart from calculating prevalence rates of primary problems a key analysis of interest will involve sem that will treat indices of mental health and functioning as outcome measures and the range of social family and individual factors as predictors the essential outcomes from the initial phase of the study will emerge from sem analyses that will identify the key risk factors triggering events and mediating variables that lead to adaptation in the communities and contribute to sound mental health the power of the sem analytic approach with this sample is that it can specifically identify the direct and indirect pathways to difficulties and resilience in the affected communities for example it may be that a specific risk factor for poor mental health outcomes is counteracted by other protective factors sem will allow us to identify the relative contributions of these different factors this is the essential requisite step that will allow evidenceinformed programs to promote recovery in these communities social network analysis the second significant research intention is concerned with quantitative measurement of the social relations among community members and the impact of social connectedness on individual mental health and overall community outcomes this form of analysis will be used in those communities where adequate response rates are achieved while for most network studies at or near saturation is desirable for the social network analysis participation rates that are significantly lower than saturation can be accommodated through other approaches such as conditional estimation approaches that can be implemented on only a sample of the network or methods for estimating missing network data as well as model parameters an important element of the measurement approach is that we not only ask whether someone receives or gives social support but also from whom they receive help and to whom they give it in order to distinguish between both positive and negative social support we will also ask participants to identify any persons or organisations that make them feel upset or make it difficult to receive practical assistance the measurement approach is done in a way that affords matching of named individuals across respondents as a result we can obtain a profile of relationships underpinning the giving and receiving of support we propose to examine social connectedness using statistical network models which accommodate both crosssectional and longitudinal network data going beyond the very simple technique of counting social ties or asking about general perceptions of social support these models provide detail regarding mechanisms of social selection and influence that affect the observed patterns of social relationships within an affected community this approach thus allows to us to examine whether individual mental health and other characteristics are linked to specific network substructures in which individuals are embeddedin this way we can expand our understanding of mental health deficits as affecting not only the individual and hisher family but also as potentially linked to the wider pattern of social connectedness within a community indepth interview and thematic analysis an inductive thematic analysis of the indepth interviews will be conducted by coding and categorising the issues as they arise conducting within and across category comparisons to identify patterns and themes and sampling further to allow clarification of emerging or contradictory evidence and to confirm findings this descriptive analysis will be considered and developed further in reference to the themes informing the survey instrument and identified in the existing evidence base the subsequent conceptual analysis will then be considered in relation to existing social and health theoretical frameworks to develop a theoretical understanding of the needs and experiences of the study participants that can be applied more generally to bushfire survivors this will illuminate the survey findings and provide a greater understanding of factors likely to enhance resilience for individuals and communities following bushfires and other disasters ongoing bushfire activity it is recognised that threatened or actual bushfire activity or other significant event may occur in the participating communities at some stage throughout the study the study will continue as a means of capturing the impact of these events utilising the strong community partnerships to ensure the study progresses sensitively and is adaptable where required to community needs mixed method analyses the quantitative and qualitative components will be conducted sequentially with baseline quantitative data informing sampling for the initial qualitative interviews each component will then be analysed independently with merging of data occurring at the final interpretation stage to extend the breadth and depth of understandings 31 data access due to the extremely high value of this data a copy of the survey data will be kept indefinitely at the australian data archive in canberra which stores many important study collections for future research there will be strict controls over who can see that data and what it can be used for study outcome and outputs the outcome of this study will be the development of new knowledge about community based strategies likely to maximise long term community and individual recovery from bushfire disaster the study outputs will include a range of methodological and outcomes research papers to contribute to the international disaster evidence base a review of policy and service delivery by study partners informed by the study findings a list of recommendations about specific communitybased strategies to enhance community and individual recovery postbushfire disaster ongoing multisector partnerships to support further research trials and evaluations ethics approval ethics approval for this study was granted by the university of melbourne human research ethics committee and the victorian department of education and early childhood development research committee discussion climate change is expected to lead to increased natural disasters in the years ahead 3 for this reason a greater knowledgebase is urgently needed to shape policy for disaster preparedness and response in terms of innovation this study extends many previous epidemiological studies that have addressed prevalence rates of established disorders by profiling the broad range of problems that can develop following disaster closely characterising the dynamic relationship between community functioning and mental health outcomes tracking the impact of the disaster and the mobilisation of social resources and the implications for children and adolescents establishing a platform for longterm surveillance that will track mental health wellbeing and social trajectories over the medium to long term postdisaster these advances are highly innovative because they set the understanding of both community and individual level factors within a systemic context rather than adopting the traditional medical model that narrows attention to individual functioning apart from being highly relevant to communities that were largely destroyed or disrupted by the fires in victoria this approach will markedly extend current models of disaster response by the development of a coherent account of both community and individual response factors this represents an important development internationally in the conceptualisation of emergency management because it offers a systematic empirical base for the first time recent consensus meetings following massive disasters in which the chief investigators have been involved have pointed to the critical need for studies that provide longitudinal evidence of factors that will lead to better community and individual outcomes following disaster at a more local level this study represents an extremely significant advance in identifying the needs of those directly affected by the victorian bushfires and enabling evidencebased planning and service delivery by the partner organisations specifically this study incorporates a combination of a social network analysis an assessment of community attachment and an epidemiological study that will allow detailed characterisations of the interplay of community interpersonal and individual factors in shaping community and individual outcomes the way in which people form close personal relationships often referred to as attachment is receiving interest as an important factor in recovery from disaster and trauma 32 an experiences in close relationships scale has been chosen to assess this construct and analysis this provides an ideal link between social networking and mental health analysis these analyses will lead to characterisations that go beyond the simple explanation of social relationships being important for recovery in particular using new statistical methods for dynamic interdependent social processes we will develop both descriptive and predictive accounts of the impact on community and individual wellbeing of a variety of individual factors as well as preexisting and emerging aspects of social connectedness this approach will assist us to establish a dynamic map of the pathways that generate exacerbate moderate and protect against adverse outcomes in people who experience a disaster event hence the study will facilitate understanding not only of the pathogenic factors but also the modifiable conditions which communities can be assisted to address to build resilience and overcome past adversities thereby averting mental health problems that currently undermine peoples capacity to recover from disaster it is recognised that the variables used in this study to select a diverse sample of victorian communities is limited given the complexity of community experiences however the range of variables used in the selection strengthens the likelihood that the participating communities capture a cross section of community issues and outcomes the study data will also provide an opportunity to examine the range and representativeness of the sample and the complexity of individual and community experience it is anticipated that recruitment of study participants particularly children and young people will be challenging because of community dislocation posttrauma sensitivities research fatigue and the recovery demands on individuals in the fire affected communities recruitment may also be difficult in communities which were less affected by the fires because of perceptions of study irrelevance the communitybased participatory approach will however assist in building trust and rapport and increasing the relevance and appropriateness of the strategies used posttrauma research raises a number of ethical concerns the instruments chosen for this study are routinely used in general and posttrauma populations it is well recognised that questioning an individual about their experience of traumatic events may precipitate some emotional reaction however the likelihood of being negatively affected by these questions in an ongoing manner is small the available research evidence suggests that minimal distress of short duration can be expected in a very small minority of participants importantly research has shown that experiencing distress does not affect participants willingness to continue in the study 33 34 35 considerable steps have been taken including development of a suicide risk protocol to ensure that a range of assistance is available in the unlikely event that participants are distressed by this study conclusion this study aims to profile the range of mental health wellbeing and social responses to the victorian 2009 bushfires over time in its use of multiple methodologies and a multidisciplinarymultisectoral team including an extensive network of community partners it presents a model for future post disaster mixed methods approaches affected and unaffected communities will be surveyed to map the predictors and outcomes of mental health and social functioning in children adolescents and adults conducting the study over five years and focussing on social networks will provide new insights into the interplay between individual and community factors and their influence on recovery from natural disaster over time the study findings will thereby expand understanding of long term disaster recovery needs for individuals and communities and inform improved policy and practice impacting on health and wellbeing for communities affected by disaster endnote a this seifa index provides a general socioeconomic index summarizing a wide range of information on the economic and social resources of the households in an area the index is based solely on disadvantage and therefore a higher score out of ten reflects less disadvantage a detailed discussion of the mode of collection and analysis of the seifa indices can be found at the australian bureau of statistics website competing interests there are no financial competing interests to report for this study involving the study investigators or study partners this includes reimbursements fees funding or salary from an organization that may in any way gain or lose financially from the publication of this manuscript either now or in the future or financial support for the publication of this manuscript nor do any of the investigators have any stocks or shares in an organization that may in any way gain or lose financially from the publication of this manuscript either now or in the future nor do any of the investigators hold or are currently applying for any patents relating to the content of the manuscript or receiving any reimbursements fees funding or salary from an organization that holds or has applied for patents relating to the content of the manuscript consistent with the participatory approach of this study some of the study authors represent organisations as listed in their affiliations that have an interest in or are involved in policy or service delivery that will be informed by the study findings the remaining authors declare that they have no competing nonfinancial interests

background natural disasters represent an increasing threat both in terms of incidence and severity as a result of climate change although much is known about individual responses to disasters much less is known about the social and contextual response and how this interacts with individual trajectories in terms of mental health wellbeing and social connectedness the 2009 bushfires in victoria australia caused much loss of life property destruction and community disturbance in order to progress future preparedness response and recovery it is crucial to measure and understand the impact of disasters at both individual and community levels methodsdesign this study aims to profile the range of mental health wellbeing and social impacts of the victorian 2009 bushfires over time using multiple methodologies and involving multiple community partners a diversity of communities including bushfire affected and unaffected will be involved in the study and will include current and former residents at the time of the feb 2009 fires participants will be surveyed in 2012 2014 and funding permitting in 2016 to map the predictors and outcomes of mental health wellbeing and social functioning ongoing community visits as well as interviews and focus group discussions in 2013 and 2014 will provide both contextual information and evidence of changing individual and community experiences in the medium to long term post disaster the study will include adults adolescents and children over the age of 5 discussion conducting the study over five years and focussing on the role of social networks will provide new insights into the interplay between individual and community factors and their influence on recovery from natural disaster over time the study findings will thereby expand understanding of long term disaster recovery needs for individuals and communities

introduction intellectual disability is emblematic of a deficit or decrease in neurodevelopmental functioning and is distinguishable by its significant intellectual and adaptive behavioural limitations that emerge before the age of 18 1 the intellectual functioning assessment of id focuses on cognitive abilities including problem solving and reasoning acumen adaptive behaviour includes conceptual practical and social domains such as selfcare social interaction and learning abilities 2 factors such as immature judgement and abstract thinking are a demonstration of a deficiency in the interpretation of the environment and an individuals inability to selfprotect 13 the social domain deficit in the child with id expresses itself through communication linguistic and conversational difficulties which result in a difficulty to regulate ones own emotions and behaviour furthermore poor social judgment in these children limits their understanding of risks in social environments and exposes them to manipulation by others as they struggle to express their rights 4 compromising their safety the deficit in idrelated cognitive functioning is a causative factor of reduced knowledge about personal safety skills which subjects these children to maltreatment by others 5 nonetheless disability is not only confined to the bodily impairment of these children but the political and social environments are also linked to the exclusion of the children with ids involvement and participation in societal activities and programmes crucial for human development 6 the concept of safety is located primarily on protection and prevention of physical and psychological harm within ones environment as well as ensuring comfort and freedom from fear 7 furthermore maslows theory of hierarchical needs posits safety and security needs as the most basic human need whose fulfilment engenders satisfaction of the human beings physiological needs 3 this theory identified the safety and security needs as those of avoiding harm maintaining comfort physical safety order structure protection and freedom from fear furthermore failure to fulfil these hierarchically ordered needs eventually disrupts ones progress towards other levels of love belonging selfesteem and selfactualisation 3 studies found that children with id have low safety abilities resulting from difficulty in learning safety skills required for selfdefence 8 in addition the safety of the children with id focused largely on their physical and relational wellbeing as well as receiving assistance from people they trust to eliminate the risk posed by both strangers and those they know 9 the united nations convention on the rights of persons with disability further promotes the safety rights of children with id by ensuring respect for their human dignity and protection from abuse and exploitation including forced labour 10 these rights are enforced by united nations conventions on the rights of children which enjoin all member states to protect and provide all children with id with proper care through development and implementation of legislative measures that prohibit maltreatment against them 11 in south africa the increase in ids prevalence is not clearly indicated due to the lack of accurate epidemiological data 1213 notwithstanding the country is implementing various regulatory mechanisms and institutionalorganisational involvement to ensure protection safety and security of persons with intellectual and physical disabilities the department of social development department of women children and people with disabilities unicef assert that people living with disability are likely to be the victims of rape and sexual assault and some reported court cases were not thoroughly investigated owing to their vulnerability as witnesses 14 the south african constitution and the white paper on persons with disabilities further advocate for the rights of children with id and their protection against abuse and exploitation from their families institutions caring for them and any member of society 15 thus promotion of these rights confirms and underscores the obligation to protect the children with id from unjust treatment and further encourages access to health rehabilitation and education services 11 due to the decisionmaking deficit among children with id their survival needs depend mostly on their family members as primary caregivers in a home environment however families raising children with id require support from communities to function effectively as a unit 16 studies have established that the existence of a child with id in families highlights the beginning of a journey that requires adjustments by the whole family 17 previous studies indicate that the child with id enters the family and creates inevitable crisis of the family system resulting in a sense of tragedy that dismantles its stabilised functioning level 18 in most cases a home environment for upbringing of children in african families requires the involvement of the community including family members extended families neighbours friends and inlaws 19 the study by briggs and hawkins 9 also found that children with id were at risk of violence in their own homes and schools and from peers and their safety is a struggle for their families as such the increasing prevalence of people with id globally motivated the researchers to conduct this study to explore and describe the safety of children with id in rural areas with limited resources such as the capricorn district of limpopo province south africa studies have shown that children living with id continue to experience social stigma and discrimination which compromise their basic human right to safety and security 13 compared to their peers without id currently there are few studies on the safety of children with id hence exploring their safety needs and experiences will contribute to the body of information and knowledge with respect to reducing their neglect exploitation and abuse it is noteworthy that the vulnerability of children with id subjects them to avoidable and preventable harm compared to their peers without id 20 significantly exposing them to a higher risk of being the victims of multiple incidents of neglect trauma and abuse 8 furthermore social stigma and cultural beliefs towards people with disabilities have impacted on the community support provided to the families who raise children with id 21 regrettably there is limited literature focusing on the experiences of the safety of children living with id 9 which is fundamentally the motivation for the current qualitative study undertaken to explore the safety of children with id through the experiences of their families raising them in the rural areas of capricorn district of limpopo province south africa materials and methods research design a qualitative research design was adopted to explore and describe the experiences of families regarding the safety needs of their children with id a semistructured interview guide was utilised during indepth individual facetoface interviews and focus group discussion with the sampled families directly raising and caring for children with id in the home environment 22 the approach was suitable to provide information on these families views regarding the safety of their children with id participant recruitment twentysix participants were recruited from a sample of families raising children with id in the rural villages of capricorn district limpopo province participants were recruited from multiple sites consisting of villages under tribal authorities and municipalities in capricorn district the district is the economic hub of limpopo province and offers better education delivery of health care and other services as well as work opportunities compared to other districts in limpopo province the core function and common denominator among these families as caregivers are that they were raising and providing direct care to children with id participants were recruited primarily through mental health clinics and day care centres attendance registers the snowball sampling method was utilised to reach and recruit those potential families raising children with id not known in the community facilities the eligibility criteria were premised on the inclusion of family members above 18 years of age who were willing and consented to participate in the study and also lived with and provided direct care to the children with id in the home environment furthermore the researchers found it instrumental according to their own judgement to include the families with children over 6 years of age and a diagnosis of id already confirmed either by health care providers early childhood development centres or schools it was the opinion of the researchers that at this age their developmental abilities can be compared with their peers of schoolgoing age such families were regarded by the researchers as having adequate experiences and information on raising children with id eventually the family members participating in this study consisted of 16 mothers 1 father 2 guardians 3 aunts 1 grandmother 1 grandfather and 2 uncles rearing children with id all participants were directly involved in raising children with id table 1 below indicates the sociodemographic information of participants showing that the care and safety of the children with id were often the responsibilities of mothers who were not working at 615 most children at 692 were staying at home and not attending any schools or day care centres mostly members of these families caring for the children with id were female primary caregivers at 846 these families were often singleparent families at 42 indicating a high rate of femaleheaded households data collection the study conducted 16 individual indepth interviews as the primary research method and focus group discussion of 10 participants as the follow up with the sampled members of families raising children with id the study explored their experiences on the safety needs of their children with id the focus group discussion consisted of female participants only and was as homogenous as possible to allow them freedom to share and express their opinions and experiences of raising their children with id 2223 factors such as gender age educational level and relationship to the child with id contributed to the selection of focus group discussion participants to promote spontaneity and interaction on their experiences 23 the focus group interview further allowed collection of diversified information on the safety of children with id from participants who had knowledge of raising children with id 24 the individual interviews were conducted in the participants natural home environments where the children are raised by these families the focus group was held at the home of one of the participants who was willing to attend but could not leave her child alone the natural environment allowed the researchers to understand the context in which the families raise their children with id 25 family members who participated in individual interviews were excluded from the focus group discussion to allow comparability of data 22 data from individual interviews were used to form a baseline to conduct focus group discussion semistructured interview guides were designed for both interviews and were tested through piloting and questions were refined into a final version with an assistant intellectual disability expert to gather quality information 26 the first author has experience and professional practice in mental health and intellectual disability as a research instrument observational field notes made during the interviews and group discussions captured the behaviour emotional status and attitudes of the participants in relation to their experiences of raising the child with id 24 all interviews were audio recorded and the credibility of this study was promoted during prolonged interaction with participants in the field between august and january data analysis thematic analysis of data was conducted concurrently with their collection to allow continuous reflection and development of themes in an inductive logical way 22 the sociodemographic information from both individual and focus group interviews was consolidated and is presented in table 1 to further explain the characteristics of participants the audio recorded interviews were transcribed typed into an excel sheet and converted into intelligible statements relevant to both the research problem and the attendant objective of the study 2223 related codes from both focus and individual interviews were allocated to associated categories and uploaded to atlasti computer programme a summary was made to indicate of how the two sets of data were connected and complemented each other codes were also allocated to the alphanumeric coding list through coding manager assistance emerging groups of families were allocated similar codes and translated into categories and subcategories 2325 the totality of the emergent information from the themes and subthemes was then summarised into meaningful findings that emerged from integration of both individual and focus group interviews as evidence of the study 22 additionally the analysed content of literature and other relevant documents served a complementary function together with the empirically generated evidence such as themes and subthemes in the overall development of the study findings guarding against bias of the first author with professional practice and experience in mental health and intellectual disability the first authors academic supervisor confirmed emerged themes three themes with subthemes emerged on the safety needs of children with id as experienced by their families ethical considerations the study received ethical clearance to commence with the empirical data collection process from the research ethics committee of the department of health studies at the university of south africa formal written permission to collect data at capricorn district sites from the limpopo department of health as well as the capricorn health district all the sampled participants voluntarily signed the researchers prepared consent form as an indication of their willingness to participate in the study and also gave verbal permission for the researchers use of the audio recorder during both the indepth individual interviews and focus group discussion 22 results the inductive thematic analysis of data revealed a lack of safety of the children with id most families reported a lack of support and poor involvement in the safety of children with id among members of the nuclear family who were regarded as caregivers community members and professionals providing services to these children the study protected the identity of participants by making use of pseudonyms to present the excerpts theme 1 the role of nuclear family the study findings revealed that most families raising children with intellectual disabilities were not functioning as a unit to support each family members safety accordingly not all family members played active roles towards care and protection of the children with id the mothers affirmed poor participation by other family members in ensuring the safety of the children with id subtheme 11 sibling interaction mothers complained mostly of the behaviour of siblings who were not welcoming of a brother or sister with id the following extracts attest to this assertion by the mothers only one child does care about her sibling and she helps me continuously the other children do not care much and they separate her from others if i must go somewhere i will send her via a taxi to her sister so that so that she can be safe the other children do not care much the 11 years old does not understand or like his brother when asked to give him food he just throws the plate i am not satisfied the way he treats him i am also worried because he is the one who sleeps with him as he sometimes has fits epileptic seizures during the middle of the night the main challenge is in the family they dont understand his moods and they say wrong words and sometimes beat him up they dont understand him some family members indicated that the safety and security of the children with id rested upon their shoulders as mothers more than any other family member as such their care burden increased but they still felt obliged to take the responsibility due to a lack of trust in some of their family members on the safety of their children with id subtheme 12 fathers role mothers reported that fathers were not participating actively as a unit in decisionmaking regarding the care of their children to ensure safe environments as attested by the following excepts it is very difficult i had conflict with my husband as he once told me to take the child to his biological father he married me with the child we struggle financially my husband is not part of the care of the child my child needs total care so i must work to support my children as the child is eating a lot the results revealed a lack of cohesion in some families where fathers provide less support to their partners to raise their children with id there is a lack of fathers responsibility to ensure that childrens human needs are met by all family members as primary caregivers theme 2 the role of the community the findings showed a lack of active participation and support from the community towards the safety and protection of children with id the families raised a concern in relation to their neighbours and interaction with their peers without id subtheme 21 neighbour support role affected families indicated a lack of safety of the children with intellectual disabilities in their own communities who were expected to lend support in raising these children the families felt that their children were not safe and were rejected by their neighbours and their peers in the community who did not suffer from any id the following statements bear testimony in that regard neighbours do not support us they always tell their children not to play with my child they thought i would always keep my child in my house neighbours are a challenge when it comes to support i am forced to be always available to protect the child and make sure that he plays in the yard because if he goes out there is a problem when i ask them why my child is hurt they my neighbours always tell me that they were children playing and i should not be involved as an adult i need to protect her and make sure she is always happy and safe as she is my child the families expected support from neighbours as part of the community to ensure that their children with id feel safe around them the children were rejected by some neighbours who restricted their childrens interaction with children with id some families decided to keep their children behind doors to ensure that they are safe the study also found that some community members violated the childrens rights by exploiting and engaging some of the children with id in physical labour and paid them a pittance as reflected in the belowcited statement the child roams around and works for community and they pay him less money he fetches water for them the study revealed a lack of understanding of the rights of children with id by the community members some community members took the opportunity of saving expenses by exploiting the children with id to perform hard labour duties and further taking advantage of their status subtheme 22 interaction with peers families reported that the children were bullied by their peers in the community taking advantage of their inability to selfprotect due to poor insight and judgement my child sometimes walks around and that is why i worry about his safety especially because he cannot fight back when beaten by other children some community members do not accept him and others throw stones at him i do not understand how they view him some parents do not allow their children to play with my child indicating that he is not normal if they other children play with him my child he is always crying and when i come out of the house they run away leaving my child alone that is hurting me thus why i keep my child in the house to make sure he is safe the abovecited excerpts are emblematic of the perception or view that the community tended to marginalise the children with id sheerly on the basis of their mental status consequently some of the affected families tended to hide or selfisolate their children from the community as a means to protect them and ensure their safety furthermore these excerpts demonstrate rejection and poor social interactions of these children with their peers without id theme 3 the role of professionals the affected families reported a lack of concerted professional responsibility in ensuring the safety of their children with id at school day care centres and community health care services subtheme 31 schools and day care centre facilities the families referred to negative experiences regarding the safety of their children with id at schools and day care centres the following statements attest to their concerns regarding their childrens safety needs that continued to be neglected in the care of professionals i feel like my child is not safe after the school transport dropped him i realised the child was not free until i discovered that it was due to school ill treatment he was bullied by other learners at school last time i took him to a certain school i found that he was scratched on the face and when asked i was told that they are not with them over the weekend i once again found his leg swollen and they told me that maybe a bug or some insect bitten him i was angry because they did not inform me and i took my child to the clinic i wish that boys and girls be separated at special schools for the girls to be protected and safe nevertheless i do not trust them because they do not know when they are doing wrong things separation will help and the schools will be safe families reported injuries of their children with id at schools and day care centres the study revealed a lack of reporting by professionals to their families on the progress of their children with id the families were more concerned about the care of these children where the injuries were not prioritised another family member raised further concern about the police services not taking action to investigate reported cases of their child with id who was sexually abused by another learner with id at the same school for learners with special needs this occurrence was articulated thus i was told by one of the learners that my child was sexually abused by another learner the teachers did not tell me anything and that worried me and i decided to take my child out of the school and reported the matter to the police when i made followup the case was dropped without explanation they did not take it seriously on the one hand the above excerpt aptly demonstrates the highly unacceptable and discriminatory behaviour of the police as societys protectors on the other hand the extract above shows that the rights of children with id including regarding sexual contact were not considered to be violated and not taken seriously compared to their peers without id the families expected interventions from professionals to ensure that children with id are protected and feel safe under their care subtheme 32 community health care centres families were concerned that the community health providers do not prioritise their children with id including nurses and social workers the children were subjected to waiting in long queues to receive services like any other clients for consultations with the clinic visits i have to queue like all patients and it is difficult to manage the child because he is always running outside the social workers told me the things that i did wrong regarding the care of the child and accused me that i do not take care of my child i am worried because social worker just judged me without getting part of my story this finding gives evidence that health care providers at the clinics were not providing expected support to the families of the children with id this revealed a lack of commitment by professionals to prioritise the rights of children with id to promote their safety discussion this study explored the safety needs of children with id as experienced by family members living with caring for and raising these children data analysis showed a lack of safety of the children with id in their home environment communities and institutions run by professionals the families reported the safety needs of their children with id as those factors that enable their children to always feel safe and secure around them the social model of disability asserts that a lack of support to the human needs of children with disability impacts on the degree of social inclusivity and their ability to participate actively in their homes and community irrespective of their own bodily incapacity induced by their disability status 6 a safe home involves support of basic human needs by the family members living in the same households including fathers mothers siblings and grandparents a previous study found that in australia home was the safest environment for those with id than any other place 9 comparably the current study findings highlight that home environments were not a safe place for all the children with id some children were subjected to maltreatment by their own family members involved in their care the study revealed evidence on siblings illtreating the children suffering from id whose safety depends on them as family members this compromised the safe home environment of the children with id the findings relate to a canadian study that found that siblings of children with id more often presented with mental health disorders including depression than those without a sibling with id 27 in addition it is further revealed by a previous study that siblings experience anxiety which results in hostility and anger towards the children with id 28 furthermore a previous study in the netherlands found that siblings were more worried about taking over future responsibilities from their parents to care for their sibling with id 29 which may contribute to maltreatment of their sibling however positive attitudes towards a family member with id requires acceptance of the condition by the whole family 30 as a basis for a safe place to raise them the study supports that such conversations should be started in the early stages of child development to equip them with knowledge of id 29 the study further identified the need for fathers roles regarding the safety of children with id the findings revealed that mothers undertook the added responsibility of ensuring that the children with id are safe from internal and external threats or risks in support of this finding it was found that in south africa fathers left their families avoiding being associated with children with disability 21 the literature asserts that children with id have fewer relationships with those nuclear family members who expose them to unsafe home environments 31 the study highlights less support of mothers by their spouses who were always absent either due to work or failed relationships leaving all parental responsibilities to mothers duran and ergün 32 found that in turkey mothers of children with id were frequently in arguments with their spouses over the care of these children most participants were women and either single parents divorced widowed or separated from their spouses raising the children without support of their partners thus most families in this study were femaleheaded households leaving children without father figures it has been established by research that children with id from singleparent households suffer a double social stigma and lack of support from their communities 33 the social stigma exposes children to environments where their safety is not guaranteed however this study was conducted in rural areas where most fathers were working far from home contributing to poor relationships with their children and further weakening the safety of environments of their children with id similarly in namibia spousal support on raising children with id was a challenge in most families 33 however some mothers in this study preferred to stay at home to care for their children with id on their own to ensure their safety compared to other family members this increased unemployment in such families impacting negatively on their financial support in african rural environments children are raised by the community members making sure that all children feel safe in the presence of neighbours and their peers 19 however in this study families lacked support from community members and neighbours regarding the safety needs of the children with id some children with id were bullied by their typical peers without intervention of the community members some neighbours regarded such maltreatment activities of children with id as a normal part of the child development process this evidence further indicates a lack of commitment discrimination and compromised human dignity of these children from their own communities affecting their safety needs in line with this finding the literature revealed limited contact between people with id and their neighbours in the netherlands 34 such limited contact exemplifies an implicit exclusion form that effectively bars those with id from meaningful involvement in neighbourhood activities similarly a previous study found that in switzerland some of the children with id were at risk of being isolated and rejected by their typical peers 35 however in ghana and zambia families expected societal inclusion of the children with id to enhance their safety among their peers and with their neighbours 36 provision of safe and nurturing environments to children with id requires active involvement of communities to prevent abuse and neglect and further protect the childrens citizenship rights crucial for human survival 37 most children with id in rural areas are diagnosed at school day care centres and health care facilities where their developmental milestones are compared to their typical peers however the findings showed a prevalence of poor professional engagement insofar as the safety needs of the children with id were concerned at schools day centres and health care facilities the findings revealed that some children were found by their families either injured victimised or illtreated in these facilities under the care of professionals in line with this finding a previous study found that children with id experience rejection in special schools 38 in this study victimisation was highlighted by families reporting fewer interventions by professionals to promote safe environments at these facilities some families raised sexual violence towards their children with id at schools which was not reported by the professionals this finding converged with a previous study that found that school staff members underreported suspicious cases of child victimisation at schools 39 due to a lack of knowledge attitudes and communication skills 40 these findings further resonate with research that found that in south africa teenagers with id were targets of sexual violence 12 similarly a previous study revealed that in the united kingdom children with id were exposed to avoidable and preventable harm under the care of the professionals who did not exercise the same level of care they accorded the children who did not suffer from id 20 however the families took it upon themselves to report the matters to the police who did not pursue the cases this finding is consistent with those of greco et al 39 highlighting that possible victimisation reported to the corresponding authorities for further assessment was withdrawn without interventions such a lack of reporting and passive response to such cases provided families with evidence that their children were not safe in these facilities regardless of the constitutional rights educational policies for educators in south africa are not yet adequately aligned to the protection of the rights of children with id at schools 13 to make such institutions a safe place hence in this study some families opted for their children to stay at home not attending school or day care centres and risked a bleak future without education for them to be safe rather than endure illtreatment and bullying at schools this further impacted negatively on the childrens rights to basic education in comparison a ghanaian study found that parents preferred to take their children with id to special schools where they were confident that the safety needs of their children with id will be fulfilled 41 the study further revealed that special schools were not exceptionally safe places for children with id as some children were injured at schools and day care centres as found by previous studies and this study further training of educators and support staff on the safety of children with id and reporting procedures will promote interventions by these facilities to ensure a safe place for these children furthermore implementation of intervention programmes in schools on positive change encourages social interaction between children with id and their peers without id 38 the families reported health care providers who failed to prioritise the safety needs of children with id the children were left to roam at the clinics while waiting for consultations during follow up care the study revealed that most children were not attending health care services as required for monitoring of their development this was evidenced by use of a snowball technique to trace children with id during data collection a previous study found safety inequalities and a lack of advocacy for people with disabilities in the health care systems 42 another study indicates that parents of children with id are expected to manage the medical care and behaviour of their children with disabilities in health care facilities by professionals 43 the study suggests professional advocacy for children with id to encourage utilisation of health care services by the children with id and their families however the results should be interpreted in consideration of the limitations that were noted firstly the research was conducted in underdeveloped rural areas where men generally migrate to other cities in the country for greener pastures as such their views and perspectives were not obtained secondly records on the prevalence of children with id in limpopo province were not available which resulted in difficulty in tracing the whereabouts of children with id and their families it is in this regard that the snowball sampling method was used to locate families of children with id who were not known in the health care facilities schools and day care centres thirdly the children with id were not interviewed and their experiences were not voiced fourthly the experiences and knowledge of professionals providing services to children with id in these institutions were not explored in this study conclusions the overall findings in this study prove that that establishment of safe environments in which to raise children with id is a perennial struggle the lack of safety and security at home schools and day care centres for the children with id compounds their isolation rejection abuse and exploitation and brought psychological pain to their families and mothers in particular moreover the limitations induced by their intellectual impairment and inability to protect or fight for their individual rights continuously call for all stakeholders including their own family members extended families neighbours community members and professionals to play critical advocacy roles regarding the safety needs of the children with id data availability statement the data presented in this study are available on request from the corresponding author mjm the data are not publicly available due to information that could compromise the privacy of the research participants author contributions conceptualisation methodology formal analysis investigation resources data curation writingoriginal draft preparation mjm writingreview and editing mjm and gos all authors have read and agreed to the published version of the manuscript informed consent statement informed consent was obtained from all subjects involved in the study

background children with intellectual disability id are known to have a deficit in selfcare social interaction and learning abilities families raising these children experience a range of difficulties that require supportive systems to meet the physical psychological and social safety rights of children with id the study explored the safety of children with id through the experiences of their families in the rural capricorn district of limpopo province south africa methods indepth individual interviews and focus group discussion were conducted with 26 families directly involved in raising the children with id an inductive thematic analysis of data on the experiences of raising children with id was undertaken with the aid of atlasti 8 computer programme results the study revealed that children with id lack safety at home schools and day care centre environments due to a lack of active involvement by nuclear family members neighbours and communities including interaction with their peers and professional service providers in facilities safety of children with id is compromised through exploitation and injuries leading to marginalisation as they feared further humiliation conclusion the study highlighted that active involvement of family members communities and governmental and nongovernmental organisations is crucial in ensuring safe environments for children with id

background as preexposure prophylaxis moves closer to potential availability in developing countries practical considerations for its implementation become ever more important guidance on prep implementation for the antiretroviral drug truvada is becoming available beginning with clinical recommendations from the us centers for disease control and prevention for the us context 1 2 3 and from the world health organization for a global audience 4 these recommendations for clinicians address client eligibility the prescribing of ftctdf as prep testing schedules for hiv infection and liver and renal function followup schedules for provider visits and pill refills and considerations for discontinuing prep the populations these guidelines address include men who have sex with men transgender women who have sex with men heterosexually active men and women serodiscordant couples and injecting drug users other kinds of practical guidance also are needed such as for integrating prep into existing service delivery settings and providing community education about prep however much of this guidance must necessarily be developed at a microlevel in local country and community contexts as will be the case for behavioural components of prep interventions 5 such locally developed strategies must also build on the knowledge and experience gained from current and past interventions with the target populations as part of an ancillary study of the femprep clinical trial that tested oncedaily ftctdf as prep for hiv prevention among women at risk of hiv infection 6 we conducted a consultation with districtlevel community stakeholders experienced in hivprevention interventions with populations at risk of hiv in bondo and rarieda districts nyanza province kenya our aim was to answer the following research question what are some locally grounded approaches to future rollout of oral prep to local populations at risk of hiv infection if clinical trials show the method to be effective more specifically based on lessons learned from the provision of hivprevention interventions what might be some of the barriers solutions and facilitators related to the clinical screening of potential clients for eligibility to take oral prep and to ongoing hiv testing for prep users in four local target populations the results reported here are intended to inform the design of future programs geared toward the four target populations in kenya as well as other similar populations in the subsaharan african region methods this consultation was conducted with stakeholders from bondo and rarieda districts rural communities bordering lake victoria in nyanza province kenya given that medical male circumcision has been shown to reduce the incidence of hiv infection 78 one current hivprevention strategy in the province consists of efforts to provide voluntary medical male circumcision to men in the luo ethnic group in particular in 2008 to 2009 only 45 of men in nyanzaand 22 of men in the luo ethnic groupwere circumcised compared to at least 90 in all other provinces 9 other hivprevention efforts in the region include the communication of behaviourallyfocused messages that advise people to use condoms and limit their number of partnersbe faithful to one partner encourage young people to practice abstinence or delay sexual debut 9 and promote hiv testing and treatment the prevention of mother to child transmission prevention with positives and condom distribution in 2008 to 2009 the overall prevalence of hiv in nyanza was 14 whereas in kenya as a whole the prevalence was 6 9 fhi 360 the sponsor institution collaborated on this study with impact research and development organization which also implemented the femprep clinical trial with which our study was associated at the bondo kenya site the local research team conducted all data collection in a culturally appropriate manner through the use of consultation methodologya participatory approach that acknowledges participants as experts in their field rather than viewing them as research subjects this approach also helps to create a sense of local ownership over the problemsolving process ethics review the consultation was approved as part of a larger study entitled sociobehavioral research and community planning to develop sitespecific pilot intervention plans for prep rollout by the protection of human subjects committee at fhi 360 in december 2008 and from kenyatta national hospital ethics and research committee in april 2009 the ethics committees did not consider the consultation component of the study to be human subjects research therefore the consultation participants were not required to provide their informed consent nonetheless they were aware that they were contributing to a research study whose results would be disseminated data collection was stopped before the study was completed when an independent data monitoring committee found that femprep would be unable to demonstrate the effectiveness of ftctdf as oral prep both the femprep clinical trial and the study reported on here were then ended in 2011 consultation description the objectives for the consultation were we selected four target populations on whom to focus during the consultation activitiestwo broad groups and two specific groups elaborated below this selection was based on populations identified as local priorities for oral prep during semistructured interviews with civil society leaders and public health stakeholders these four populations were 1 young married and unmarried men including fishermen and motorcyclebicycle transporters 2 young married and unmarried women including women at the beaches of lake victoria and luo widows 3 female sex workers hiv serodiscordant couples the first two groups were to be narrowed down into smaller subgroups by the consultation participants because we believed that the issues around hiv prevention and prep implementation might be distinct for different subpopulations of these broader groups consultation participants consultation participants consisted of 20 individuals from bondo and rarieda who were experienced in working with atrisk populations organizations that were represented included the ministry of health faithand communitybased organizations health facilities community groups and nongovernmental organizations if the study staff did not know of anyone at a given organization who was qualified to participate in the consultation personnel at the organization identified an appropriate individual each invited participant was asked to indicate his or her first and second choice of the four target populations to discuss during breakout groups we then assigned consultation participants to four groups of five discussants each based on their experience and preferences we limited the number of people invited to the consultation to 20 this was to ensure that the breakout groups were small enough to encourage active participation by everyone in the groups breakout group discussions for the breakout groups the fhi 360 and impact rdo researchers codeveloped a structured discussion guide questions focused on challenges of working with this target group in the context of hiv prevention successful and unsuccessful strategies for influencing this group possible barrierschallenges organizations might face in providing prep to the target group as well as strategies for addressing them strategies for educating the target group about prep barrierschallenges organizations would face in recruiting members of the target group to come to a health clinic for blood and urine screening tests to learn if they qualified to take prep and strategies for addressing them barrierschallenges related to hiv testing as part of eligibility screening and strategies for addressing them strategies for improving hiv testing services in order to test people in each target group every 3 months the discussion guide included tables for participants to complete to help them systematically record the barrierschallenges and solutionsfacilitators generated during the breakout group discussions consultation the consultation was held on june 30 2010 at a hotel in bondo the agenda consisted of sessions that described prep in general a the femprep clinical trial and the sociobehavioral research and community planning study including results of the data collected 1011 these presentations provided participants with a context for discussions about rolling out prep to the different potential target populations the sessions were followed by questionandanswer periods and group discussion consultation participants then divided into their assigned breakout groups responded to the questions in the guide during group discussion and completed the tables provided a note taker for each group also recorded the main points on a flip chart at the end of the breakout period each group reported the highlights of their discussion back to the larger group a wrapup session was held before the consultation was adjourned we collected the completed question guides and flip chart notes in order to aggregate the completed tables for distribution to attendees results were also later shared in subsequent consultations with public health stakeholders at the provincial and national levels data analysis a researcher from fhi 360 then analysed the data iteratively the analyst used nvivo 90 a qualitative data analysis software to code the information in the aggregate tables as pertaining to one of the four target populations the analyst then further coded the data as either a barrier or a solutionfacilitator using emergent subcodes for example a segment of the data might be coded as serodiscordant couples and then also have the code barrier stigma applied individual barrier and solutionfacilitator subcodes were then assessed to see whether they were related to each other through any common theme the analyst then determined that all subcodes could be grouped into one of three themes 1 service deliverylevel barriers and facilitatorssolutions 2 communitylevel barriers and facilitatorssolutions and 3 target populationlevel barriers and facilitatorssolutions the researchers who collected the data then verified the data interpretation and corrected inaccurate assumptions rationale for the consultation format we chose the daylong consultation format to collect this data for two reasons first before collecting information from the consultation participants we needed to inform them about oral prep in general the femprep clinical trial and the ancillary research study at handall of which would together take more time than a focus group or interview would allow second we believed that we would gain the most information from an interactive approach in which consultation participants worked together to apply previous lessons learned as they jointly developed locally grounded strategies description of target populations the breakout groups focusing on young men and women elected to focus on fishermen and widows respectively based on their unique life circumstances and highrisk sexual behaviours the four target populations discussed in the consultation were thus fishermen widows female sex workers and hiv serodiscordant couples we will first describe each group briefly before presenting the consultation results fishermen fishermen who work on lake victoria are at high risk of hiv infection due to having multiple partners with whom they often have unprotected sex these partners may include wives girlfriends and female fish traders 12 fish populations are dispersed in lake victoria such that fishermen must be mobile in order to be successful the lack of refrigerators at the beaches means that fish have to be sold immediately and as a result fishermen establish multiple home bases and families in the landing communities closest to the fish populations 13 in addition the ratio of fishermen to female fish traders can be as high as one to three creating competition among women for the right to buy fish to sell in the market this gives fishermen leverage to make sexual demands of fish traders such as unprotected sex 13 fishermen may also have unprotected sex because of a culture of risk denial or risk confrontation related to fishing as a highrisk occupation 14 fishermens subculture has also been characterized as including tolerance of danger fatalism and the need to prove their masculinity 15 as mojola 13 notes t his orientation along with heightened uncertainty of life expectance and cultural norms supporting living life to the fullest might partly account for why unprotected sexual relationships persisted in the face of growing aids related mortality other risk factors for hiv among fishermen include alcohol use as a coping mechanism for job stress extended time spent away from home leading to multiple sex partners high mobility the young age of people in this occupation access to disposable cash on a daily basis availability of commercial sex in fishing ports and social marginalization 1214 a 2005 survey of 250 fishermen in kisumu kenya found them to be young and married with 14 in polygamous marriages nearly all of the married men were involved in extramarital sex characterized by low condom use twothirds of the fishermen surveyed reported engaging in transactional sexproviding money shoes clothing and the right for female fish traders to buy his fish in exchange for sex 16 widows traditionally widows in the luo ethnic group the predominant ethnic group in nyanza province are inherited by a male relative of the deceased husband unprotected sexual intercourse is required for sexual cleansing of the widow as part of inheritance rituals as well as during rituals preceding major events such as before planting or harvesting however relatives of the deceased husband are increasingly hiring nonrelative professional inheritors or cleansers due to the fear of hiv as many womens husbands are feared or known to have died of aids 17 18 19 20 21 both professional inheritorscleansers and inheritors related to the deceased husband typically have multiple sex partners increasing the risk of hiv transmission social pressures within the community encourage widows to be inherited for example they otherwise may not be permitted to enter homesteads or work they are prohibited from and impede other family members from planting and misfortune is said to be likely to befall their children 1921 widows often consider inheritance beneficial because it allows them to gain social acceptance within the community prevents them from having multiple sexual partners enables them to conceive more children can be economically beneficial and allows for satisfaction of sexual needs 21 however whereas traditionally widow inheritance meant economic and social support for the widow many inheritors are reported to no longer contribute financially to the household and may in fact expect to be provided with food and services furthermore children fathered by the inheritor are believed to belong to the deceased husband and are often not supported financially by their biological father 1821 uninherited widows are also at risk of hiv infectionthey are often in dire economic circumstances and may have unprotected sex with multiple men who might help them economically they may not use condoms with boyfriends who are often older married and perceived as less risky than inheritors 22 agot and colleagues found that widows inherited by nonrelative males for sexual rituals were more likely to be infected with hiv than those not inherited and that widows inherited for companionship by relative males were less likely to be infected than uninherited widows 17 luke 22 found that inherited widows are more likely than married women and uninherited women to believe that they are at higher risk of hiv infection as a result some widows elect not to be inherited 22 in agot et als sample of 1987 kenyan widows the women had a mean age of 35 years and nearly all had children 17 female sex workers female sex workers accounted for 141 of the new hiv infections in kenya in 2008 23 voetens 24 description of selfidentified female sex workers in saida and bondo districts of nyanza indicated that they tend to be in their early to midtwenties are unmarried and have children who depend on them economically in addition to the sex partners they consider to be clients women also tend to have at least two regular sex partnersincluding some former clientswhom they do not consider to be clients and who may possibly pay them for sex directly or indirectly as in other sex worker populations consistent condom use is lower with regular partners than it is with clients 24 these womens risk factors for hiv infection include having multiple concurrent partners who often have multiple partners themselves 12 drug and alcohol abuse leading to highrisk behaviours 1225 and anal sex as a result of client demand 26 sex without condoms may be more highly remunerated than protected sex 27 and other types of work may pay less 12 on the other hand sex workers in kenya and other locations in subsaharan africa have also been found to use condoms more frequently with clients than they do with boyfriends or primary partners but they may use condoms less frequently with regular clients due to a perception that hiv risk is low with regular partners in general 12 28 29 30 another factor contributing to sex workers vulnerability to hiv is the illegal status and clandestine nature of sex work in kenya as a result women may not admit to doing sex work making it difficult to reach them with interventions 12 hiv serodiscordant couples in 2007 the kenya aids indicator survey found that among the nearly 18000 couples surveyed 10 had one or both partners infected with hiv and 60 of those couples were serodiscordant an estimated 344000 couples were then said to be serodiscordant across kenya 31 in nyanza province 13 of couples were serodiscordant in 20082009 9 serodiscordant couples were identified as an atrisk group in the kenya national aids strategic plan 23 but prevention strategies have been found to be weakly implemented contain no systematic messages and have been left to research pilot projects 32 demographic and behavioral characteristics of discordant couples were reported for the partners prep study a randomized clinical trial of daily oral tdf and ftctdf prep to decrease hiv1 acquisition within hiv1 serodiscordant heterosexual couples that included four sites in kenya in that study the median age of hivnegative partners was 33 years and 62 of those partners were male most couples were married for a median of 7 years twentyseven percent reported unprotected sex during the month prior to enrollment and sex with outside partners was reported among 14 of hivnegative male and 1 of hivnegative female partners 33 the negative partners vulnerability to hiv infection includes unprotected sex the positive partners fear of disclosing their hivpositive status to the uninfected partner due to concerns about stigma and a belief that serodiscordance within couples is not possible 34 in one study in rift valley kenya hivpositive women in discordant couples reported fearing that if their status was seen as indicative of infidelity their children could be disinherited 34 in the kenya aids indicator survey 2007 members of married or cohabitating couples were found to be more likely to disclose their status to their partner than were people with girlfriendsboyfriends or in casual relationships 31 results below we present the barriers and facilitatorssolutions to prep introduction that were identified during our regional consultation service deliverylevel barriers and facilitatorssolutions several barriers and facilitators were identified related to service delivery for hiv prevention in general one such barrier for serodiscordant couples was the dearth of health workers at the local level who were trained on issues relevant to serodiscordant couples for female sex workers the stakeholders described the inaccessibility of female condomsa femalecontrolled method of hiv preventionas a barrier to health educators being able to advocate for women to protect themselves against hiv they said that female condoms are both expensive and difficult to find for prep provision specifically discussants focusing on widows highlighted human resources as a barrier they said that there were not enough trained staff who could provide mentoring to junior staff whose capacity would need to be improved in order to assist with prep service provision and with conducting followup activities for widows taking prep stakeholders discussing serodiscordant couples cited the lack of equipment in laboratories as a barrier for both prep provision and hiv testing for prep users they said that this could be addressed by encouraging costsharing and collaboration among stakeholders in order to hasten the process of testing blood samples couple counselling and partner referrals were suggested as facilitators for hiv testing for fishermen and serodiscordant couples consultation participants suggested providing mobile hiv testing and counselling to fishermen as a way to improve provision of regular ongoing hiv testing for prep users whereas providing ongoing homebased hiv testing and counselling was suggested for all other target groups moonlight vct along the beaches for fishermen and staffed by peer educators for female sex workers was also suggested in addition the widows discussion group suggested deploying enough counsellors to community vct sites to improve service provision they also suggested providing widows with incentives for hiv testing discussants in the female sex worker and serodiscordant couple groups suggested establishing effective followup systems to help prep users adhere to clinic visits and regular hiv tests they mentioned client reminder systems like using schedule cards home visits and phone calls to reduce defaulters communitylevel barriers and facilitatorssolutions stakeholders suggested potential resistance to prep on the part of the community and family members as a barrier to prep implementation among fishermen they recommended providing education about prep to the general community family members and sexual partners similarly the consultation discussants cited the communitys potential nonacceptance of prep as a barrier to implementing the method among serodiscordant couples a solution would be to work with community stakeholders and gatekeepers to conduct social marketing stigma was cited as a barrier to successful hiv prevention interventions among all target populations consultation participants cited the stigma of getting tested for hiv as making it difficult to convince fishermen and female sex workers to access hiv testing for prep eligibility screening and ongoing prep monitoring for fishermen mass hiv testing among the general population moonlight vct and community education were suggested as strategies to address the stigma whereas community education advocacy and peer educators were suggested to address any stigma affecting female sex workers willingness to get tested for hiv stigma associated with the testing of blood samples for liver and kidney function during clinical screening for prep eligibility was mentioned for fishermen widows and serodiscordant couples participants proposed addressing such stigma by conducting community education about blood draws discussants in the breakout groups for both fishermen and widows anticipated that there would be stigma in the community related to the fact that ftctdf is also used to treat people who are infected with hiv they suggested continuous education to debunk myths about hiv involvement of female partners and community sensitization to encourage people to accept those taking ftctdf as prep stigma by the community and families directed against people who are hiv positive was said to make it difficult to provide hivrelated services to serodiscordant couples the stigma associated with disclosure was also described as problematic for this group solutions that discussants proposed consisted of providing continuous community education with the goal of minimizing stigma and educating family members and partners to accept people living with hiv target populationlevel barriers and facilitatorssolutions access to target populations discussants mentioned that gaining access to the target populations was problematic because of their occupational mobility and night time working hours discussants said that in addition sex workers do not like to be identified as such because sex work is illegal in kenya when sex workers are subjected to sexual violence they said it can be challenging to successfully encourage them to seek legal redress serodiscordant couples were described as a hardtoreach population because they do not like to disclose their hiv status publicly due to stigma also the high rate of divorce among serodiscordant couples was discussed as leading at least one member of the couple to relocate to a different home making him or her difficult to locate the discussants suggested that the potential for divorce could be addressed by training health workers and counsellors to engage with couples and by conducting continuous couples counselling to help couples understand how to avoid hiv transmission to the negative partner in addition discussants said that widows and members of other groups who relocate after starting prep must be targeted with education on the importance of reporting relocation lifestyle and circumstances of target populations the culture of fishermenthe tendency to have multiple often concurrent sexual partnersand fishermens negative attitudes towards hivprevention information were cited as challenges to any hivprevention intervention discussants indicated that discussion groups and seminars that promote hivaids awareness as well as recreational activities like sports and community drama have been successful in engaging fishermen and reaching them with hivprevention information and services the cultural traditions of the luo ethnic group were described as negatively affecting the ability of luo widows to access and use hiv prevention services and methods the group cited specifically the cultural practice of widow cleansing that prohibits women from using condoms during sexual cleansing rituals a successful strategy for working with widows on hiv prevention has been to involve them directly in planning activities allowing them to own programs community meetings were suggested to educate them on their human rights related to hiv prevention the group discussing widows also suggested encouraging them to form groups in which they could initiate incomegenerating activities to boost their financial status and reduce their economic deprivation and dependency similarly the consultation participants described that in their experience workshops on human rights legal issues and risk reduction methods have been successful in empowering female sex workers to minimize their risk of hiv infection along with income generation activities and microfinance opportunities to help them give up sex work and reduce their risk discussants in the female sex worker and serodiscordant couple groups noted support systems for prep users as a facilitator for prep use and hivprevention interventions in particular they recommended support groups and preventionwithpositives activities where serodiscordant couples could obtain peer support and encouragement and female sex workerformed support groups or buddy systems through which they could encourage each other to get tested for hiv female sex workers taking prep were also described as potentially benefitting from regular ongoing community education on drug and substance abuse and from populationspecific information education communication materials providing continuous education on the importance of quarterly hiv testing was suggested as potentially beneficial for fishermen taking prep fears lack of awareness and misinformation among target populations fear of hiv testing and learning ones status was cited as a barrier for all groups both for current hivprevention programs and for future efforts to encourage people to get screened for eligibility to take prep strategies for addressing this fear were continuous community education creating awareness among the community about the importance of hiv testing and knowing ones status organizing moonlight hiv testing individual counselling and giving more time to clients in the counselling sessions to help them understand and make decisions about getting tested for hiv and taking prep discussants in the serodiscordant couples group said that fears about the side effects of prep could deter this population from using it they suggested that fears could be addressed through continuous community education and sensitization and by providing examples of cases in which people have used prep successfully having to disclose hiv test results to a partner was another fear held by this population that could negatively affect recruitment efforts for eligibility screening and ongoing monitoring of hiv status strategies the discussants suggested focused on the importance of disclosure and included couples counselling involving family members in group counselling and working with peers to have them pass on information regarding the importance of disclosure serodiscordant couples were also said to fear the pain of being pricked and losing a lot of blood their fears could be allayed the discussants suggested by counselling them that the pain is temporary illustrating the quantity of blood collected and explaining the reason for the tests counselling and community education about blood draws and the importance of sample testing could also help to address widows fear of blood draws that might discourage them from getting screened for prep eligibility discussants also talked about ignorance and misconceptions as challenges to prep implementation widows were described as ignorant about hivprevention strategies in general fsws were said to likely be ignorant and have suspicions about the concept of prep and widows fishermen and serodiscordant couples were described as ignorant about blood sample testing perhaps having the misconception that samples collected for eligibility screening or ongoing monitoring would be sold or used for other purposes community education education to members of the target populations and individual counselling were suggested as means of creating greater awareness a strategy to address ignorance and misconceptions among fsws was group education at the workplace on basic prep facts and on the need for hiv testing among prep users issues for uptake of prep among target populations other barriers to prep implementation were related to uptake and included the distance to the dispensing facilities if centralized the burden of having to take a drug every day and nonadherence to pill taking and clinic visits for drug adherence issues discussants recommended drug adherence counselling as well as counselling that involves family members whereby clients could be asked to have a friend or family member remind them to take the drugs also recommended as facilitators for serodiscordant couples were couple counselling and including family members in adherence education they also recommended collecting locator information for female sex workers to facilitate the process of making home visits intended to encourage adherence to clinic visits summary the barriers and facilitatorssolutions that discussants provided were frequently populationspecific but there were also broadlevel similarities across populations for example service delivery barriers to hivprevention interventions focused on the need for staff trained specifically to address the needs of particular target populations service delivery facilitators to provision of ongoing hiv testing consisted of offering more testing options than just facilitybased testing stigma was the main communitylevel barrier for all groups barriers at the level of the target populations included the mobility of all four populations the lifestyle and life circumstances of target populations especially cultural norms and traditions among fishermen and widows and fears lack of awareness and misinformation among all target populations some facilitators and strategies that were proposed by the consultation discussants for addressing these barriers included topicspecific educational efforts within each population and in the community involvement of partners and family members mass hiv testing among the general population in order to normalize it and involvement of peer educators discussion we asked consultation discussants to identify barriers and facilitatorssolutions to implementing hiv prevention and prep interventionsin particular eligibility screening and ongoing hiv testing for prepwith fishermen luo widows female sex workers and hiv serodiscordant couples in bondo and rarieda districts nyanza province kenya the purpose was to generate tailored strategies that could be used to inform program design for each potential local target population for oral prep we focused on specific target populations for oral prep because targeted provision to populations at risk of hiv may maximize oral preps impact 35 36 37 38 yet the utility of these consultation results for some readers may rest on the extent to which they are applicable to other areas of kenya outside of bondo and rarieda districts as well as contexts outside of kenya on the one hand many of the barriers to hiv prevention that were identified for the target populations in bondo and rarieda are widespread in subsaharan africa and elsewhere many of the barriers also support others findings regarding likely challenges to prep implementation particularly stigma and lack of trained staff 3940 on the other hand local tailoring in each country context may be the best approach for developing effective solutions to address these widespread barriers that said there will also likely be regional similarities in the applicability of the solutionsfacilitators among target populations fishermen based in the lake victoria region in tanzania and uganda share characteristics with kenyan fishermen working in the bondo area 41 42 43 44 45 46 47 48 widows in bondo have commonalities with widows in other countries in subsaharan africa 49 50 51 52 53 female sex workers in other parts of kenya and subsaharan africa have similarities with the female sex workers discussed here for kenya 54 55 56 57 58 59 60 61 62 and serodiscordant couples in all regions of subsaharan africa tend to share similar characteristics 63 64 65 66 the four broader groups across subsaharan africa may therefore be affected by the clinical requirements for oral prep use in similar ways thus the often innovative solutions and facilitators that consultation discussants provided based on their experience with what has and has not worked with these populations have application for program planning beyond bondo and rarieda districts in kenya we consider this to be the major strength of the research presented and the utility of the research for international audiences particularly program planners the consultation results also are applicable beyond implementation of oral prep given that regular hiv testing and counselling will be an essential component of any combination prevention strategy 36 as discussed here hiv testing and other blood tests will form part of eligibility screening for oral prep and ongoing hiv testing will be required to address the potential for the acquisition or development of drugresistant strains of hiv 1 2 3 4 5 other arvbased formulations such as gel vaginal rings and injectables will also have at a minimum the initial and ongoing hiv testing components if not the initial lab tests depending on the formulation therefore the consultation results on initial and ongoing hiv testing for oral prep will apply to interventions that include these other prep formulations as well consultation with local stakeholders in planning for prep implementation has been recommended by various researchers and planning groups 386768 a strength of our consultation is that it engaged local stakeholders who brought realworld on the ground experience to the discussion on oral prep moreover their views were communicated to provincial and national public health stakeholders in subsequent consultations providing an opportunity for their voices to be heard by people who would be involved in highlevel planning in addition to our knowledge this consultation is the first activity of its kindthat is designed to develop practical locally grounded strategies for prep rollout the expertise and transferrable experience of the community stakeholders with fishermen widows female sex workers and serodiscordant couples will be a valuable contribution to the design of future prep interventions in kenya with these groups our work has several limitations originally our intent in this study was to triangulate the data from this consultation with interview data on uptake of services based on the perspectives of members of the target populations however we were unable to collect the target populations views on the topic due to the early closure of the study after the femprep clinical trial was stopped in addition collecting the target populations perspectives would have added to the credibility of the data in terms of demonstrating support for or divergence from the findings of the consultation however the people who participated in the consultation were experts in hivprevention interventions among the target populations in this geographical and cultural context thereby conferring credibility to the findings another limitation is that although the methodology itselfa consultation meetingwas culturally appropriate for collecting the perspectives of these stakeholders it nonetheless did not yield a transcript that could have been coded qualitatively and that could have supported the written documentation of the consultation some detail from the discussions may therefore have remained undocumented in addition although adherencewhich has been discussed as a key to the success of any prep program 376970 was brought up briefly by discussants we did not overtly address it in the consultation this was because acceptability of taking a pill is likely to be quite different from the acceptability of a larger package of safety screening longterm use behavioral intervention hiv testing and potential costs 68 also we did not specify the type of hiv blood test to be conducted for initial and ongoing screening because this was an unknown factor at the time of the research we conducted this consultation well before the results of any prep trials were available with the understanding that it would take time to develop and coordinate all the different pieces necessary to mount prep interventions should it prove effective such early research was recommended in 2007 71 and our results are now timely given that proof of concept for arvbased hiv prevention has been shown for oral prep and tenofovirbased topical prep 35 72 73 74 next steps will be for national and local public health stakeholders in kenya and countries with similar populations to incorporate the consultation results into demonstration and pilot projects and evaluate the effectiveness of the facilitators and solutions for addressing the barriers scaleup of the study results were beyond the scope of this research study however in order to facilitate local use of the results they were formally disseminated to nationallevel public health stakeholders both at a national meeting on arvbased hiv prevention in naivasha kenya in 2012 and in a report summarizing the overall study findings in 2013 it is now up to public health program planners at the national and provincial levels to implement the research results as they see fit conclusions the clinical protocols that have been recommended by cdc and who for determining prep eligibility and conducting ongoing hiv and safety testing are likely to be applied in a fairly universal way across different country settings and populations however strategies for encouraging people to get screened for eligibility and to comply with the ongoing hiv testing schedules will clearly have to be tailored for the local context to meet populationspecific needs our results nonetheless have application for other similar target populations in the region and reach beyond oral prep to other arvbased formulations for prep of hiv endnote a note that the consultation was held before the announcement of results from any oral prep clinical trials abbreviations prep preexposure prophylaxis note femprep is not an acronym competing interests the authors declare that they have no competing interests

background as preexposure prophylaxis prep moves closer to availability in developing countries practical considerations for implementation become important we conducted a consultation with districtlevel community stakeholders experienced in hivprevention interventions with atrisk populations in bondo and rarieda kenya to generate locally grounded approaches to the future rollout of oral prep to four populations fishermen widows female sex workers and serodiscordant couplesthe 20 consultation participants represented the ministry of health faithand communitybased organizations health facilities community groups and nongovernmental organizations participants divided into breakout groups and followed a structured discussion guide asking them to identify barriers to implementing hivprevention interventions including prep with each population questions also solicited solutions for addressing these barriers as well as other facilitators for prep implementation in particular questions focused on how to encourage people to screen for prep eligibility by having hiv and other blood tests and how to encourage compliance with ongoing hiv testing results the barriers and facilitatorssolutions discussants provided were frequently populationspecific but there were also broadlevel similarities across populations service delivery barriers to hivprevention interventions concerned the need for staff trained to address the needs of particular populations service delivery facilitators to provision of ongoing hiv testing consisted of offering testing options besides facilitybased testing stigma was the main communitylevel barrier for all groups whereas barriers at the level of target populations included mobility lifestyle and life circumstances especially cultural norms among fishermen and widows and fears lack of awareness and misinformation proposed facilitators and strategies for addressing communityand populationlevel barriers included topicspecific education within the populations and community involvement of partners and family members mass hiv testing and peer educators barriers to prep uptake included nonadherence to pill taking and missing clinic visits for drug adherence facilitators were counselling and involving family members discussants suggested that client reminders eg home visits were needed to encourage clients to keep their clinic appointments

introduction there are specific conditions of island living that may be significant in their psychological impact on individual islanders and the group psychology of island communities by applying a social psychological lens to the experience of small island life and drawing on related theoretical frameworks we attempt to examine how the island environment may psychologically impact the individual island resident and their interpersonal relationships a key rationale for asking this question is to understand what if any implications there may be for maintaining the sustainability of small islands in terms of democratic social and societal functioning as well as for the psychological wellbeing of islanders if as some islanders maintain there is something particular about islands and islanders this inevitably prompts the social scientist to ask what this islandness is from a specifically psychological perspective we might also ask whether it exerts cognitive and behavioural influence and how to some extent the work of putz and conkling provide a partial description of the what in their descriptions of islandness however they stop short of describing theoretical models accounting for its emergence or influence furthermore conkling acknowledges that islandness is a construct of the mind but omits to articulate precisely what psychological architecture or theoretical models might be relevant to explaining the construction in perhaps the most recent articulation of the psychology of islandness baldacchino explains that islandness can contour and nudge behaviours and systems however despite progressing the discussion significantly beyond the work of putz and conkling the constructs mechanisms and theoretical underpinnings of baldacchinos behavioural nudges remain open to speculation and debate drawing on the foundations provided by the aforementioned authors we began by asking whether an island mentality might be empirically identifiable in the discourse and behaviour of islanders furthermore if such a mindset were discernible within these discourses and behaviours might it provide clues as to the genesis of islandness and any theoretical mechanisms by which it exerts psychological influence the paper draws on fieldwork conducted in two british island locations in 2019 and was initially conceived to investigate the longterm viability of communities on small islands the fieldwork grew from the initial brief to encapsulate a range of potential concerns amongst islanders including an exploration of health and mental wellbeing in small island communities but also islanders response to the challenges of small island living and identifying the resources available to them our initial thesis was that several social psychological models might prove to be relevant and usefully applied to island communities including identity theory and social identity theory while the application of these models is not necessarily a unique or novel academic perspective on island living its application as a lens through which to explore the phenomenological account of islanders response to challenges does represent an extension of the existing literature furthermore it offers a useful lens through which to view island community sustainability a key premise of the work reported herein is that there is no reason to assume that the psychological processes set out by identity and social identity theory should not be readily and appropriately applied to small island populations indeed if as others have previously observed community affiliations are particularly strong on islands then this prompts us to ask whether associated activation of islander identity might occur even more readily on smaller islands in other words are there features of the small island context which may be particularly potent activators of both intraand interpersonal psychological dynamics the rationale for this question is also informed by a social psychological theoretical assertion that social dynamics and identity are influenced by the size and composition of social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal groups but also the environment place identity is conceptualised as a sub structure of the selfidentity of the person consisting of broadly conceived cognitions about the physical world in which the individual lives although proshansky wrote specifically about the idea of an urban identity we see no reason why the same processes should not correlate to a nonurban environment indeed the varied topographical features of island living and the extent to which they impact on the daytoday experience of islanders seems ripe for linking to self and social identity this is likely to be particularly the case on very small islands where the combined factors of littorality boundedness and remoteness impact on every facet of life every island setting is of course unique each will have its own history environment and social and cultural traditions spatial factors impact on this and indeed in an island context both the space on the island and its relative distance from other islandsmainlands has considerable bearing we make no assumption that there is likely to be a universality of island experience social dynamic or identity that said there do seem to be similarities in the formation of island identity that are worthy of greater scrutiny and several questions remain concerning its emergence and the influence it exerts the social psychological lens offered by the theoretical frameworks outlined above can help to make sense of intraand interpersonal stress and tensions however they can also account for the social affiliations and identity that can provide social capital and protective factors against individual and community hardships eg in the case of emergencies with that in mind we might expect social identity processes to offer as many benefits to island communities as they do risks indeed identity might serve to promote resilience in response to hardship but any hardships collectively experienced by islanders might also further strengthen identity the current study specifically sought to explore a broad range of psychological experience of island life in summary several previous authors have proposed a psychological and or behavioural profile of islanders however there are a number of questions arising concerning how we might account for the emergence of this islandness or what its implications might be potentially useful theoretical perspectives in response to these questions are offered by social psychology which suggest that island environments might activate identities and social affiliations that are relatively unique and contribute to the formation of this construct of islandness if this were the case and islander identity is a component of islandness then we would expect it to provide a source of both social capital and resource but also potentially highly visible stress and division within and between groups importantly an understanding of both benefits and costs associated with island identity have implications for our understanding of resilience and risks to the sustainability of island communities with that in mind the authors set out to explore how social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal the island mindset or islandness described by previous authors might manifest in thought and behaviour and how this manifestation might illuminate its origins and influence when viewed through a social psychological theoretical lens methods study sites as we have discussed elsewhere we chose to anonymise our islands although the islands are termed a and b for clarity like many rural communities small island communities can serve to incubate talk and speculation in a way that can be damaging to those wishing to speak openly or to challenge orthodoxies attempts by other researchers to anonymise participants individually or communities in part have not always been successful and so although there are disadvantages to this approach we have opted not to disclose the islands on which we conducted our research that said a degree of context is useful in situating the research we do not wish to contend that all islands are comparable or that even all the islands off the coast of britain share the same interests and issues however the islands which we visited have a number of similarities they were well situated in the realm of the very small both with populations of less than 5000 they have varied populations of both resident islanders and seasonal visitors and economies that are very much dependent on tourism a particular reason for the desire for anonymity amongst our participants was the nature of the tourist industry on the islands with the effect that they are to an extent run as company towns where one or a small number of peoplecompanies manage accommodation food shops and employment as well as transport to and from the island as such participants were concerned that either painting a less than idyllic picture of the island would negatively impact on tourist numbers or more tangibly that it could lose them their jobs in terms of access the islands are onshore in that they are easily accessed from the mainland however they are variously accessed at different times of year and this presents a number of logistical issues as well as psychological ones for island residents whereas the summer months see access via boats which are cheap frequent and allow for carrying more baggage the winteroff tourist season months see access primarily by air which is considerably more expensive less frequent and more restrictive for reasons of expedience we accessed the islands by air on our research visits however the research team had previous experience of travelling to one of the islands by boat and so we were able to reflect on this difference the islands both trade on a bucolic view of island living which given the beauty of their natural environments is broadly justified they present an idea of an unchanged traditional destination without many of the pressures of the day to day experienced by mainland communities they promote a slower pace of life a greater engagement with nature and a freedom from the interference of traffic noise and pollution both as a tourist destination and as a way of life whilst inequality clearly exists it does not fit with the island narrative of an idyll and this presents a number of problems for those adversely affected as well as potentially limiting the tourist offer to appeal to those who conform to or appreciate the view of an old fashioned monocultural britain it also causes problems for residents with a scarcity of housing stock as much housing is used for the holiday rental market a situation exacerbated by the nature of local land ownership where few landowners hold much of the property a differing range of services are available on the islands one has very little provision the other is quite well resourced including schools medical provision and a range of mainstream public sector services however these are not allencompassing so for example there is a lack of specialist medical care or dentistry no tertiary education and limited scope for employment needless to say the gaps in key provisions impact some residents more than others and at particular life stages connectivity to the mainland is also problematic with slow internet access and the potential for services to be cut off completely during storms data collection using an immersive qualitative approach we set out to explore the psychological impact of living on very small islands whether there was an alleged island mindset and to what extent island factors impacted on this as with much research we started with deskbased work reading up on our island locations for example by reviewing local authority plans for them and their own community consultations to ensure the areas we were concerned with were also pertinent to residents we also conducted telephone conversations with contacts from small island communities which allowed us to refine our questions and approaches we visited two islands off the british coast island a was visited for two separate weeks in the spring of 2019 and then a two week follow up in the summer of 2019 island b was visited for a week in the spring of 2019 one of the researchers had already spent a considerable time on island a and knew it well as well as being well known to a number of the residents the other researcher was new to both island locations our research took an immersive approach where we based ourselves on the islands engaging as much as possible in island living as well as organising interviews with participants this had a number of benefits it enabled us to see the ebb and flow of island time and the way in which that dovetails with different transport options presenting a slightly different rhythm of life to that in a wellconnected mainland community it also enabled us to experience the allencompassing visceral nature of island living where landscape and elements are so integral to life crucially it also supported us to forge connections with residents to talk to them informally about their work and to build trust so that they would see benefit in social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal participating in our research through interviews in some instances this meant joining in with activities whether helping repair a wall changing sheets in a rental property sea swimming or clearing breakfast in a bed and breakfast there is often an invisible wall separating touristvisitor activity from resident activity so our willingness to join in with some menial or routine tasks granted us the privilege of momentarily bridging the gap between tourist space and the residential one in the two periods of field work we interviewed over 20 participants each of whom had a range of island experience from being newer residents frequent visitors or longstanding residents as is reflected in the results below some of our participants had also lived for varying periods of time on other islands none of our participants were born on the islands we researched however some were married to native islanders had had their own children there or had lived there for decades we also interviewed several people who had previously lived on one of the two islands each interview started with an introduction of the research and appropriate formalities and then generally covered what had brought the participant to the island in the first place how long they had been there and what their role were whilst this was useful for pleasantries and for setting the participants at ease it still yielded important data for us about the often life changing decisions that had brought participants to their current island home interview questions explored ideas of islandness what makes people stay the functioning of the community and way in which people come together we also asked about landscapeislandscape factors the particularity of the environment and pushpull factors from the islandmainland when conducted indoors and wherever practicable interviews were audio recorded and then transcribed some interviews were undertaken at participants request during limited opportunities to accompany them while they worked on these occasions recording was not possible and field notes were collected field diaries were also used and where two researchers were present findings were discussed daily through walking debriefs and more conventionally dinner finally we would like to note as part of our methodology our positionality in relation to this research as has previously been noted by other island studies scholars the nonislander researcher inhabits a difficult space baldacchino articulated the issue very clearly when he observed that island studies are frequently not by with or for islanders but of them this challenges the nonislander researcher to reflect on our abilities and responsibilities when researching those living on islands particularly when we ourselves are not islanders in response we explicitly acknowledge our subjectivity but also responsibility as nonislander researchers however we do assert that we have sought to act as affiliates and allies who have remained engaged with our own position in relation to the researched indeed this positionality and our allyship with our participants played a significant part in our decision to anonymise the islands and islanders we worked with data analysis on returning from the fieldwork we transcribed our recorded interviews and used the nvivo software package to analyse them using thematic analysis thematic analysis was specifically chosen as it offers researchers a flexible and pragmatic approach to coding and analysis this analysis resulted in themes and data that are accessible to a wide range of audiences data were approached inductively considering each interviewees perspective individually as well as considering the context within which each perspective developed this was achieved via a process of data familiarisation and systematic coding of each transcript in turn the analysis then shifted to looking to identify themes across the corpus of data given that psychological experience was a focus of the enquiry semantic coding and then subsequently latent coding was undertaken a follow up period of fieldwork on island a allowed for discussions with participants and a sense checking of both semantic and latent codes after the generation of initial themes an iterative process of reviewing transcripts again and triangulating with field notes commenced this provided an opportunity to identify the presence of some themes across multiple interviews and sources of data and then refine and name them as a research team during these discussions we were able to test their coherence and consider the quotes which best illustrated them in readiness for reporting analysis discussion having covered a variety of topics in our interviews inevitably our initial themes were themselves wide ranging and encompassed a number of areas that are well rehearsed in the island studies literature these included resource scarcity tensions within the community crossing from the mainland to the island and the islandscape in this paper we particularly wanted to focus on the psychological aspects of island living and their impact which we found to be represented frequently in the corpus of data we focus on three specific themes that were particularly pertinent to the psychological experience of our participants and these are presented and discussed below theme 1 newcomers the psychological strain of their arrival but also departure island communities are made up of a number of different groups of people these might include those born on the island long standing residents newer residents visitors and touristsday trippers our analysis found evidence that participants referred to those with whom they interacted according to a social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal form of taxonomy as might be predicted by sit furthermore and equally predictably the differing interests of these groups had the potential to be a source of tension within the community in keeping with social identity theory the regular arrival of new people is likely to precipitate a process of defining and redefining the ingroup and outgroup social identity theory predicts that the cues created by regular new arrivals will particularly in small communities trigger increasing levels of ethnocentrism resulting in the development of criteria which are then deployed to categorise include or exclude people this was evident in our data which identified islanders tendency to appraise newcomers according to criteria that to them signalled their ability to integrate into the community key to that was the perception about doing a winter which was seen as something which marked you out as a committed islander as was an enthusiasm for getting involved and contributing to the community we found evidence that newcomers were very aware of these criteria and a process by which they were being appraised as two of our participants explained kirsty youre accepted as long as youre prepared to be a part of the community dave emphatic yes k i think theres more resentment to the second home owners people who dont live here dont contribute to the community but obviously weve only been here a few months in the context of appraisal criteria which valued contribution and community engagement this may ironically be particularly challenging to live up to for newer arrivals to small islands we found that a number of newer residents on our study islands especially those moving for work were inherently mobile and accustomed to transient ways of living amongst our participants on both islands we found evidence that the move to the island was part of a relatively transient view of residence or a more nomadic mindset this was illustrated by a pattern of social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal regular moves and spur of the moment decisions we found regularly amongst our participants for these residents an ongoing engagement in the community was not necessarily an important factor in their relocation its a total wildcard romantic story but im pretty impulsive i moved my whole life to a little island after 8 days here i married someone after a year of chatting in the harbour i just get that feeling when something is right i just do it timmy island a there were also implications for those who stayed when other people especially professionals moved on making partnership working an ongoing challenge one possible factor driving the appraisal system and need for newcomers to evidence their commitment to community engagement that we observed was the psychological effect of transience on those longerterm residents affective and pragmatic costs to those who stay as others come and go may instil a form of psychological selfprotection and inevitably create a higher bar of appraisal for newcomers to meet on a small island its a nightmare because youre constantly rebuilding your professional relationships so since ive been here in 4 years weve had 4 head teachers 3 police sergeants 6 police constables 3 gps 2 midwives so youre constantly rebuilding that partnership working nicola island b perhaps in contrast to traditional social identity perspectives we found that it was not always islanders seeking to defend their island life against the out group visitors instead longer standing members of island communities were frequently observed to be more progressive than newcomers what we found was a tension whereby a lot of newer residents had moved from mainland environments in search of traditional community and brought with them some quite fixed views as to what that might look like more established and native islanders were often keener to embrace progress and change perhaps having been more sensitised to the link between longterm viability of the island enmeshed and its ability to evolve to meet the times by the very nature of their arrival incomers had the effect of diluting the very community that they were aiming to join despite yearning for what they perceived as island life another observed tension around group dynamics arose because the economic viability of the islands depends to an extent on the arrival of newcomers particularly on island b the viability of the island was dependent on the ability of newcomers to start and sustain businesses although this can then impact on the capacity of native islanders to do so where incomes are low and property prices are high the threat to group affiliation posed by this points to the likelihood of such tensions arising in this context when viewed social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal through the lens of sit but also realistic conflict theory we argue that is perhaps particularly likely in environments such as small islands where resources eg property or a client base are finite this is summarised by kirsty who had moved recently to island b to run a b b the reality is the island wouldnt survive without people coming in many people who were born here are on relatively low incomes so they find it difficult to get on the property ladder so for example a property like this a bed and breakfast without someone coming in from the mainland there would be a very small pool of people who were island born who would be able to afford to buy a business like this and take it over kirsty island b whilst the islands under consideration also depend economically on an out group the visitors were in some cases seen as a source of some of the problems for example around the performance of island identity and the need to be on the whole time theres a lot of bitching and back biting that goes on in the island community that you dont see when youre here on holiday everybody is nice to tourists and its all very chilled and relaxed but actually youve got quite a fragile community under that and totally dependent on tourists and some of them quite forget that they are dependent on tourists they can be a bit grumpy and you have to remind them that without the tourists you wouldnt have a community here nicola island b again in keeping with social identity theory these negative appraisals of tourists are inevitable and are likely to be a source of negative affect this is also picked up below as a source of stress and anxiety for island residents however there were also tensions apparent on the islands during the quieter winter months when the islands are essentially closed to visitors in these instances it seems that visitors momentarily diversify the resident community providing both distraction through work and further options for socialising as mitch says about the winter months sometimes its i cant wait til winter but after the first week i cant wait until the visitors are back again its different times despite often having a reputation as very static communities island communities are made up of those who have come from afar whether recently or several generations ago this gives a degree of contradiction to some of the identity claims made by a number of residents as true islanders as lisa says social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal i was really struck actually how for a small place how pleased people were to see you whereas ive been to lots of small rural communities and ive noticed in some places you go into the pub and you get looks and i think a lot of that is to do with sea faring you know just getting people washing up randomly from all over the place lisa island b this makes an important distinction between island and other rural communities where the population may have been more static however some islanders may take a more robust approach to the maintenance of the status quo …and that can manifest itself in many different ways you can get quite reactionary people the traditionalists like the stone kicking society who go around kicking over the stone towers that tourists make because its taken millions of years for the stones to be arranged where they are and blah blah blah and they get quite militant ben and sam island b as such we found that there was a complicated relationship between traditional identity and the transient visitors needed for island communities to develop and flourish this is very much borne out by the literature which demonstrates the ways in which islands have been way points throughout their existence offering temporary haven to those from afar however for their longterm viability island communities need to find ways to sustain and govern themselves and for residents to put down roots especially in communities with shrinking populations for example certain islands in scotland a response to this can be found through social identity theory whereby island identity is quickly and quite neatly formed by those residents who pass over from visitortourist to residentislander social identity theories suggest that membership of the group is a necessary and sufficient condition for social identity to establish itself within selfconcept the very act of becoming an islander is then sufficient for new islanders to consider themselves thus especially in contrast to mainlanders theme 2 dependencies vulnerabilities precarities and their associated psychological costs there is a wellworn trope in island studies that islanders are resilient and adept at turning their hands to anything putz referred to this as handiness in his description of islandness this is in part of course necessity when shops professionals or other resources are a boat or plane ride away making do or learning how are often the best options however as with the best tropes the reality is less straightforward while in social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal places our data reflected this independent and resilient perception of self and identity our participants also spoke of a sensitisation to their own dependence on external support and an associated sense of vulnerability that this provoked as presented below the contribution of this to island identity may provide a psychological response that suggests a potential for hypersensitisation and an associated overassessment of risk arguably indicative of a potential lack of psychological resilience although islanders might often be viewed in literature media and the mind of the infrequent tourist visitor as independent and resilient there is also often a considerable infrastructure underpinning this we found our participants to be acutely aware of their dependence on this infrastructure in a way that mainlanders rarely have cause to consider this was arguably exposed during the recent coronavirus pandemic for example on island b a resident commented that they had never lived anywhere so dependent on public services for example through the considerable public subsidy for the water supply i think its overstated here i think locals people talk about the resilience and the selfreliance but i think thats the same anywhere shaun the electrician will say were more reliant on the national infrastructure than anywhere else in britain were not in any way independent or in any way selfsufficient were utterly reliant ben island b island living presents reminders and realities of dependence for example as we found during our fieldwork when water supplies run low or electricity is deliberately switched off for preplanned periods every 24 hours for weeks and sometimes months i think its a narrative that visitors want to project about resilience theres a romantic notion that this is how the island has evolved but what you do have especially in the winter there are some really extreme sacrifices that you choose to make to live here sam island b these quotes provide insights into a sense of vulnerability to physical challenges but islanders are also renowned for a degree of mental resilience and an ability to weather storms both literal but also metaphorical this seems very bound up with the idea of an old fashioned nononsense approach to life which is perhaps a direct attack on newfangled political correctness from which people seek refuge on islands that hark back to a simpler time however as we have seen above this does not necessarily represent the lived experience of many islanders for a variety of reasons jilly illustrated this in her reflection that people here social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal dont have a great deal of resilience and they make small things really big quite quickly jilly goes on to talk about the degree of catastrophising that goes on particularly amongst parents and their ability to lose perspective for example when a social services referral was made about a teenager who had chosen not to wear their coat to school if jillys perception of limited resilience and increased catastrophisation were found to be objectively representative of smaller island communities then this may arguably be a product of the reduced reference points relative to most mainland communities with reduced populations and less contact with the world of the mainland comes less exposure to incidents of real risk and therefore a response that may be calibrated differently to the larger communities of the mainland a number of theorists have pointed to the impact of narrower cultural contexts on identity and the resulting appraisal of and responses to risk beyond participants perceived vulnerabilities associated with social and physical aspects of island life and their associated psychological response islanders also pointed to perceived economic precarities associated with employment whilst many communities experience precarity around work and especially in rural andor tourist areas with its seasonality this is particularly acute in island communities where a slightly longer commute is just not possible this leads to a variety of factors that seem to create acute stress in a number of participants who do several jobs many of which are menial or low skilled and none of which is enough alone to provide a viable income this is compounded by the short and intense tourist season so that the years income often needs to be earned in six months and which can lead to periods of concern and anxiety over work punctuated by periods of high stress its much busier and theres a lot of strain on people to make a living for that short period of time and you see that people are very busy most people have more than one job and you can see people getting more stressed for that period of time nicola island b yes everyone works and almost everyone is in the tourist industry and this time of year everyone is flat out doing 2 or 3 jobs because come october itll all ease off david island b a similar but slightly different issue is that because of a lack of professionals people who are recruited to do one job often end up taking on roles that would not normally fall within their remit as george says i think the realities of living on an island both economic and kind of socially can be quite difficult quite challenging and especially if you have a job like mine my job has progressed over social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal time the longer ive been here the more ive taken on the more responsibilities partly because of austerity measures theyve had to cut back on staff but its also partly because of the longer youre here you know the more capable you are the more gets chucked your way it seems to be theres a pattern george island b in contrast with georges experience on island b the pressures on residents of island a tended not to involve taking on multiple roles in the same way this was perhaps due to its less formal infrastructure however there were still considerable demands on their time and periods of high stress with associated deleterious consequences i think the structure in the summer is really full on its really challenging and at the start everyone is really excited about it and you can see people getting more and more worn down as it goes on and i think thats a bit of a problem timmy island a there is also the issue of underemployment on island a and the difficulty of finding roles for both halves of a couple as such one person may come to take up a skilled role leaving the partner to take on unskilled work for which they are over qualified and do not find rewarding for some people this is a price they are willing to pay to live where i used to come on holiday but for other couples it can become a source of stress in itself i dont think they should come if theyre like that because then their life is on hold while theyre here unless youre like a warden or something and youre continuing your career your life is on hold if youre working in the kitchen and youve got a degree youre getting nowhere alice island a several of our participants echoed phils sentiment and reported choosing to move to an island to capture some of the health promotion and stress amelioration they had experienced on their island holidays however they found that often the stresses from the mainland came too and that the dependencies vulnerabilities and precarities of island life provide new sources of stress and catalysed the emergence of health problems this is the focus of the final theme discussed below theme 3 island living and health a frequently occurring code in the analysis of our data referred to health and anxieties around managing health to a mainlander a trip to an island could well be taken for the perceived health benefits of a change of routine social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal and perhaps the removal of temptation coastal walks sea breezes and fewer stressors associated with the mainland make islands seem the perfect location for some constructive and wholesome rest and recuperation indeed some of our participants had made the decision to move to their islands following a healthrelated trip there timmys first trip to island a for example was taken as a mental health break from her job i was pushed to my physical limits and that was partly why the idea of coming to an island by myself to stay in a lighthouse for my birthday was a bit of like lets have a restock about what i want to do so it was the perfect answer really timmy island a however our participants found that the transition from tourist or visitor to island resident was not necessarily so conducive to health either mental or physical there were several reasons for this one key reason was that people of course take their demons with them a number of our participants felt that by moving to an island their issues or those of people known to them would be left behind on the mainland what they acknowledged less was that often the problem was within them weve all come here to find something either an answer or peace from what was on the mainland but people bring it with them timmy island a people come here for a fresh start to be invisible to repair their marriage … but if you want to repair your marriage this is about the worst place you could possibly come to due to lack of privacy nicola island b as a consequence islands which often have fewer resources than mainland communities may find that they have a concentration of people experiencing some degree of anxiety or existing mental distress and there are limitations to the support that can be provided onisland due to the basic nature of health care provision even for those who arrive on islands physically and mentally healthy the lack of accessible healthcare can create a significant source of psychological stress this works in two ways in terms of not being able to access care for oneself or to quickly be with a family member when they are taken ill everyone says the islands are beautiful and all those sorts of things and it is but you dont see the beauty in being stuck here in november when theres something going wrong with your family on the mainland and not being able to get a flight off because its foggy so theres much more of a sense of isolation social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal which is fine when you want isolation but when you dont want isolation and you need to get back to something more quickly then its a pain in the neck nicola island b access to health care is of course problematic in a number of communities and our island communities were not necessarily dissimilar from other remote rural communities in their inaccessibility to health care although island b had some health care it was very basic on island a however the presence of water creates a very real additional barrier which has a psychological as well as a physical component those miles of sea make a massive difference you can only get flown off if its a matter of life or death i think it bothers some people and thats often the reason people make the decision to leave ive got some friends over here at the minute who arent very well and i think that has been something of a deciding factor in them leaving even though if you have a heart attack youve got more chance of getting to the local hospital quicker than if you lived in a rural mainland location nicola island b the lack of healthcare in close proximity seemed to impact on people in two distinct ways for some of the younger residents this meant that they took a very proactive approach to managing their own health we heard accounts of very healthconscious approaches the body heals itself a lot of the time and i dont think people allow for that they havent been taught how to look after themselves properly whereas here theres a lot of healthy people theres a lot of vegetarians a lot of us here that actually appreciate what we put in our bodies alice island a however often the older islanders displayed behaviours that were interpreted as either ignoring or wilfully avoiding the confrontation of their poor health especially with the older population they struggle more and i dont know if its an island thing or an island a thing that some people dont want to leave like it becomes so engrained and you see that in some of the elder ones … theyre almost sacrificing their health because they so dont want to leave and i think that does affect people here definitely timmy island a social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal while obstacles to healthcare have the potential to exacerbate health issues and health anxiety we also identified island living factors that potentially cause health problems like many rural british communities life revolves around the pub and although island b had some social areas that were not pubs the social lives of both islands were very much centred on alcohol some older residents managed to find a way to address isolation but voiced concerns for younger residents you go to work in the dark and you come back in the dark and the only thing left is the pub and they younger residents dont quite get that you can be in the pub but you dont have to drink alice island a whilst there are obviously physical health problems related to excessive drinking the more pressing issues are perhaps those related to mental wellbeing and for me a big problem is the pub i mean i like coming in here but the drinking gets out of control and people get very cliquey with their drinking groups and gossipy and i dont like that timmy island a for timmy it is not necessarily the drinking itself that is problematic but the associated behaviour whereby people settled into factions with the upsetting result that some people feel excluded in social identity terms this exclusion then has ramifications for the mental wellbeing of the outgroup eroding their ability to feel accepted as part of the island community if they dont participate in the drinking culture a number of participants also expressed ideas about the need for emotional selfsufficiency so that people coming to the island had interests that could sustain them without the distractions of mainland life or recourse to drinking it was widely felt that those people who did have an interest or hobby that they could do within the parameters of island living would be better suited to life on a small island and if you say to someone do you do anything and they say not really well i go on the internet a lot you think hmmm thats not going to go well and they last a season and thats it alice island a i started getting up and going out with a telescope early in the morning to birdwatch after id finished my bar shifts so that gave me a hobby to keep me excited in the island and get me out social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal in the island rather than spend all my time in the pub mitch island a having these kinds of outside interests allows for residents to participate in the wider life of the island forming communities of interest and providing activities less detrimental to health than just drinking conclusion in this paper we have investigated and discussed the experience of islanders living on small islands from a social psychological perspective this includes exploring the ways in which the experience of island living both in terms of the physical and social environment can psychologically impact islanders this enquiry emerged from a concern about the wellbeing and sustainability of island communities but also a paucity of psychological theoretical foundation for a construct that has frequently been described in psychological termsnamely islandness we have particularly focused on how social psychological theories concerning identity might help us to understand how islandness might manifest psychologically and how it develops firstly we found a number of features of psychological experience that were highly consistent with features outlined by existing social psychological theory this included evidence of cognitive and behavioural manifestations that are consistent with social dynamics and outcomes predicted by social identity theory indeed the contents of the first theme align with sit in such a way that one might suggest that island identity might well be or at least be a significant constituent of islandness these included evidence of categorisation of those that islanders interacted with and particularly newcomers expressions of ethnocentrism oriented around perceptions of newcomers commitment to the island and its ways of life however we also found challenges to this that suggest that any assumptions about a mainlander or newcomer outgroup for islanders should be cautioned against for example where outsiders in the form of tourists might be essential to island viability any social identity processes positioning mainlander vs islander were far from universal furthermore for many islanders the frequent transience and departure of newcomers was often as much a psychological cost as was the experience of adapting to their arrival in stark contrast to the perception held and promoted by some outsiders we found that the physical environment of small islands led islanders to question their own resilience specifically our data suggested that our participants were acutely aware of their dependencies and the vulnerability inherent in this we also heard examples of how this perception might give rise to hypersensitisation to risk and potentially exaggerated cognitive and behavioural responses participants also frequently cited the stressful economic precarities of island life the economic precarity of many island communities is well documented in the literature however there is considerably less acknowledgment of the impact this can have on islander social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal selfidentity and mental wellbeing these dependencies vulnerabilities and precarities were referenced by participants as evidence of a potential lack of physical and psychological resilience and also cited as a trigger for anxiety and behaviours that might put their health and wellbeing at risk finally a very prominent and potent vulnerability identified by our participants related to healthcare the distance to healthcare and particularly emergency care had a profound psychological impact on islanders a significant health condition or even health scare was a source of considerable distress for many islanders and perhaps the most important trigger for islanders to leave and return to mainland life in the years since this research was conducted it is important to note that the world has become a very different place due to coronavirus communities that in 2019 seemed cut off from services and provisions became their own protective ecosystems with natural quarantine measures and significant social distancing where being a number of miles offshore meant being far from help covid19 resituated islands as being far from infection and contagion however this also reflects some of the larger tensions reported by islanders with regard to their health concerns there are further and notinsignificant impacts on mental wellbeing of being at a distance from medical care or from family and friends undergoing their own medical problems isolation darkness and weather factors also had an impact on peoples mental wellbeing as well as the ability to become established in the community although as we described above island communities can be welcoming to outsiders there is perhaps then an additional pressure on those who feel that they have not been accepted again social psychological theories relating to self social and place identity provide useful theoretical frameworks and are likely to be useful in future research exploring these issues in closing our research is not without its shortcomings and whilst some of these are potentially unavoidable there are also aspects that we would be keen to learn from in the pursuit of further studies the two islands we visited are not representative of all british islands let alone all islands globally further the choice to anonymise these islands could lead to the accusation of a lack of transparency which we have discussed elsewhere our interviews and experiences were specific to the time and the place and enabled by our different identities and the contacts that we already had on the islands and made serendipitously nevertheless we believe the research at the very least provides a potential contribution to a much needed theorisation of the psychology of islands and islanders importantly it highlights a number of key considerations that are important to supporting the wellbeing and sustainability of islanders and their communities prior to commencing the research we asked whether social psychological theories may provide a useful lens through which to view the island experience and islandness we also posed questions concerning whether the small island context and physical environment might provide particularly potent activators of intraand interpersonal psychological dynamics our research has enabled social psychological perspectives on islandness identities vulnerabilities and precarities island studies journal us to identify a number of ways in which islanders identities are shaped by factors inherent to island life and which in turn shape islander psychology more specifically the impact of transience narrower cultural boundaries and infrastructure limitations all influenced islanders appraisals of self relationships community and risk while these appraisals can influence identities in ways that forge strength and resilience they can also negatively impact wellbeing weaken communities and therefore exacerbate vulnerability it is important that the specificity of these are recognised and we hope this paper further highlights the ways in which islandness might manifest behaviourally however we argue that in order to support the wellbeing of islanders and the sustainability of communities then a better understanding of underlying mechanisms is also required furthermore in order to achieve this it is necessary to apply a more theoretical framework than has hitherto been evident we believe that the data reported and discussed herein suggest that social psychological models are likely to provide a useful contribution

although there are many widely perceived attractions to living on a small island island life is not without its challenges the physical aspects of these are well rehearsed the psychological ones less so drawing on social psychological theories we analyse the experience of living on small islands with a focus on two small british islands data were collected through ethnographic fieldwork involving observations and interviews with small island inhabitants we found a range of factors impacting them psychologically including several that suggest identity and social identity theories may provide a useful psychological lens for understanding these communities there were also other psychological features identified that suggest a selfperception of vulnerability these were reflected in concerns around the precarity of employment but also evident in islanders discourses around health both physical and mental these findings echo previous authors assertions concerning the existence of an island psychology evident in the experiences of island residents but also contribute to discussions around its origins and mechanisms of influence which we argue have been hitherto relatively atheoretical importantly a better understanding of island experience and the relevant theoretical frameworks can assist in supporting the wellbeing of islanders and the sustainability of their communities

introduction tobacco use continues to be the leading preventable cause of premature illness and death in the world tobacco kills up to half of those who use it resulting in over 7 million global deaths each year an additional 12 million people die from diseases caused by exposure to secondhand smoke 1 infants and young children exposed to tobacco smoke are at an increased risk of a range of diseases including low birth weight sudden infant death syndrome ear infections asthma pneumonia and inflammatory effects leading to metabolic syndrome insulin resistance impaired cardiac autonomic function and premature atherosclerotic heart disease 2 3 4 at least 500 million children worldwide are exposed to secondhand smoke at home 5 scientific evidence showing the causal relationship between tobacco smoke exposure which includes both secondand thirdhand exposure and death and disease has led to a proliferation of smokefree laws in public places throughout the world particularly in bars restaurants hospitality venues and workplaces 67 article 8 of the world health organization framework convention on tobacco control obligates parties to adopt and implement legislative and other measures providing for protection from exposure to tobacco smoke in indoor public places workplaces public transport and as appropriate other public places 8 smoking bans can result in an overall 40 reduction in shs exposure up to an 8090 reduction in highexposure areas and reduce illness death and healthcare costs 910 however at this time the fctc guidelines do not cover smoking laws inside and around personal dwellings particularly for multiunit housing where involuntary exposure to secondhand smoke most frequently occurs 211 some parents who are aware of the potential dangers of exposing their children to smoke voluntarily take precautions to protect them a study conducted in hong kong showed that maternal protective strategies included opening windows asking the father not to smoke near the child moving the child away from the smoke and removing ashtrays 12 in our qualitative study of smoking parents in israel we found that parents in smoking families employed various strategies with different levels of restrictiveness ranging from never permitting smoking inside or around the home to smoking on the outside balcony with the door open or closed to smoking only on an indoor balcony or designated areas in the home to smoking in or at a window or to smoking only when children are not present in the home the parents themselves were often confused about the benefits of these strategies 1314 restricting smoking to outside of the home has long been thought to help reduce and even eliminate a childs exposure to tobacco smoke however studies have shown that even when parents restrict smoking to areas outside the home exposure may occur increasing the risk of disease for children a study in california by matt et al found that young child tse based upon cotinine levels was 57 times higher in households of smokers who smoked outdoors than in households of nonsmokers 15 yamakawa et al discovered that maternal indoor and outdoor smoking were both associated with an increased risk of child hospitalization for respiratory tract infection 16 a study in sweden by johansson et al including young children found that parents who smoked outdoors still significantly exposed their children to twice the odds of tse relative to children living in nonsmoking households 17 jurado found that both smoking in the living room and smoking on the porch were associated with increased child urinary cotinine levels 18 a study of nursery school children in germany found that home smoking bans had a protective effect 19 the study did not differentiate between smoking on porches smoking on terraces and smoking in gardens al delaimy et al in a study conducted in new zealand found no differences in childrens hair nicotine levels as a function of indoor versus outdoor smoking without reference to balcony smoking 20 a study conducted in turkey found no statistically significant differences in urinary cotinine levels among asthmatic children whose parents smoked indoors versus outdoors 21 smoking rates are high in israel and over 60 of children are exposed to tse 22 however little is known about the association between the location of smoking around the home and child exposure we aimed to assess tse exposure in study samples of children living in nonsmoking and smoking families in israel and assess whether tse differed by smoking location we hypothesized that an unrestricted smoking policy where smoking is allowed in any room or part of the home would be associated with the highest levels of tse however based on previous literature we also anticipated detectable levels of tse among children whose parents restricted smoking to balconies or yards materials and methods study design samples and procedures the data came from two studies that were conducted in israel at the same time between 2016 and 2018 the first study was a randomized controlled trial project zero exposure which included 159 families with at least one parent who smoked cigarettes living in the household the rct assessed an intervention program to help parents protect their children from tobacco smoke details about project zero exposure can be found elsewhere 23 24 25 the second study was a cohort study of 20 nonsmoking families where both the mother and the father did not smoke 26 for both studies recruitment was conducted via daycare centers 27 via social media parents groups billboards and the snowball method baseline data collection for both studies was identical families who completed either study received a gift certificate worth 70 as compensation for their time 23 recruitment was conducted in various regions of israel eligibility criteria inclusion criteria included at least one smoking parent living in the household who smoked at least 10 cigarettes per week or no parents who smoked in the household having a child aged up to 8 years the parent were willing to provide a hair sample for research purposes and children had a sufficient hair sample for the laboratory analysis ethics and registration national institute of health clinical trials registry nct02867241 ethical approval was obtained from the helsinki committee of asaf harofe hospital the israel ministry of health and the tel aviv university ethics committee all parents provided written consent for their children to participate measures 241 primary outcome the primary outcome for this analysis was child exposure to tobacco smoke measured by hair nicotine child hair nicotine was chosen because it reflects longterm exposure 28 it is noninvasive 29 it is easily stored and transported and it is stable for long periods of time hair nicotine measures exposure to both secondhand smoke and thirdhand smoke hair samples were collected from the back of the head as close to the scalp as possible from one child in each family analysis was performed by gas chromatography with mass spectrometer detection at johns hopkins university 30 prior to analysis hair samples were washed using laboratory procedures to reduce the impact of nicotine found on the hair surface samples with low hair mass were excluded the data were analyzed in 10 laboratory batches each child was categorized as exposed or not exposed based on the limit of detection which was calculated for each batch separately based on the average lod among samples in that batch each individual sample was deemed above or below the batchspecific lod we report hair nicotine values as nicotine ngmg we analyzed tse in two ways first we assessed tse as a binary variable indicating exposed versus unexposed this approach is useful because there is no safe level of exposure to tobacco smoke so any exposure is important and also because it provides information on the proportion exposed which is easily understandable second we assessed tse as a continuous variable based on the levels of hair nicotine and used the natural log transformation because of the known nonnormal distribution of hair nicotine hair nicotine was analyzed in ten separate batches over the course of the research independent measures study 1 vs study 2 the independent variable for the first analyses was whether the children were from smoking or nonsmoking families study 1 the independent variable for the second assessment was the location of smoking we asked parents to show us where they usually smoked with the question where does smoking usually take place and recorded and categorized the responses into four categories gardenyardother place outside of the home balcony designated smoking areas inside the home or anywhere inside the house because only 3 families reported smoking in the entire house we combined categories 3 and 4 into a single category in the home for the purpose of statistical analysis we asked about the daily number of cigarettes smoked by the parents and created a variable that indicated the combined number of cigarettes smoked daily we asked about which parent smokes and categorized the variable into two categories both parents smoke or only one parent smokes sociodemographic questions sociodemographic data were used in adjusted models data collected were child age in months parental nationality maternal education paternal education monthly household income neighborhood ses 31 statistical analyses descriptive statistics were used to describe the study samples analyses smoking families vs nonsmoking families we compared child tse between nonsmoking and smoking families using a chisquared test we used a linear model to compare child exposure between nonsmoking and smoking families as measured by loghair nicotine while controlling for laboratory batch because of the small number of participants in the nonsmoking family cohort we did not perform multivariable analyses tse by location of home smoking and other explanatory variables we first assessed tse by location of home smoking using the lod using a chisquared test we also tested the bivariate relationship between abovelod exposure and each of the following variables number of parental smokers child sex parental nationality maternal education paternal education and income using chisquared tests and child age parental combined cigarettes per day and neighborhood ses using ttests next we conducted an adjusted logistic regression analysis to examine whether tse differed by location of smoking and to identify any correlates that were associated with tse while controlling for batch finally we ran parallel analyses to those above using the continuous outcome using a multivariable linear model while controlling for batch we also performed a sensitivity analysis using tobit regression results table 1 describes the sample characteristics of participating families for both studies in study 1 the majority of participating families were recruited via facebook 182 were recruited by the snowball method 157 via daycare centers and 82 via advertising of the 392 families who expressed initial interest we were able to contact 357 of these 98 families declined to participate after hearing more details 20 families set a date for a visit but subsequently cancelled the meeting and 80 families did not meet the inclusion criteria thus 159 families were successfully recruited in study 2 most participants were recruited by word of mouth followed by daycare centers and facebook we do not have a record of the recruitment method for 1 participant an analysis of hair nicotine was done for 20 children characteristics of smoking and nonsmoking families among nonsmoking families 3 of the 20 families reported that smoking sometimes took place on porches but none of them reported smoking occurring in any other setting laboratory batch results for the ten batches analyzed lod ranged from 0014018 one batch had an lod of 018 and another of 009 all other batches had lods between 001 and 005 a histogram of hair mass can be found in supplemental figure s1 hair from the smoking families was analyzed in 9 of the 10 batches and hair from the nonsmoking families was analyzed in 7 of the 10 batches in total 141 children from the smoking families and 17 children from the nonsmoking families had sufficient hair for valid laboratory analysis child tse in smoking vs nonsmoking families of the 141 children from smoking families with sufficient hair 688 were exposed of the 17 children from nonsmoking families with sufficient hair 353 were exposed the difference between them was statistically significant the mean raw hair nicotine concentration was 048 ngmg 079 in smoking families and 026 ngmg in nonsmoking families the mean log of hair nicotine was 185 in smoking families and 246 in nonsmoking families in the linear regression of lhn which included a term for laboratory batch the group variable was borderline significant batch was statistically significant and the model r 2 was 030 the association between child tse and location in smoking families figure 1 presents the proportion of children exposed in each of the homesmoking locations and supplemental table s1 presents the bivariable analyses of demographic and other variables tables 2 and3 present the multivariable models for above and below lod and lhn respectively laboratory batch results for the ten batches analyzed lod ranged from 0014018 one batch had an lod of 018 and another of 009 all other batches had lods between 001 and 005 a histogram of hair mass can be found in supplemental figure s1 hair from the smoking families was analyzed in 9 of the 10 batches and hair from the nonsmoking families was analyzed in 7 of the 10 batches in total 141 children from the smoking families and 17 children from the nonsmoking families had sufficient hair for valid laboratory analysis child tse in smoking vs nonsmoking families of the 141 children from smoking families with sufficient hair 688 were exposed of the 17 children from nonsmoking families with sufficient hair 353 were exposed the difference between them was statistically significant the mean raw hair nicotine concentration was 048 ngmg 079 in smoking families and 026 ngmg in nonsmoking families the mean log of hair nicotine was 185 in smoking families and 246 in nonsmoking families in the linear regression of lhn which included a term for laboratory batch the group variable was borderline significant batch was statistically significant and the model r 2 was 030 the association between child tse and location in smoking families figure 1 presents the proportion of children exposed in each of the homesmoking locations and supplemental table s1 presents the bivariable analyses of demographic and other variables tables 2 and3 present the multivariable models for above and below lod and lhn respectively the most common location where smoking usually took place was on the balcony followed by smoking in the garden yard or other place outside of the home and smoking limited to designated areas in the home few families smoked unrestrictedly throughout the entire house the most common location where smoking usually took place was on the balcony followed by smoking in the garden yard or other place outside of the home and smoking limited to designated areas in the home few families smoked unrestrictedly throughout the entire house among children from smoking families 750 of those whose parents smoked in the house were exposed while 618 of children whose parents restricted smoking to the porch were exposed and 714 of those whose parents smoked outside the home were exposed the proportion of children exposed did not differ significantly by smoking location in either the bivariable or the multivariable analysis for balconies vs indoors aor 074 025216 or gardens yards or other places outside of the home vs indoors aor 126 038392 likewise in the analysis of lhn location of smoking was not statistically significant in model 3 which examined the response variables in isolation while controlling for batch or model 4 the multivariable model 241 p 087 the association between child tse and other variables in smoking families the only variable to reach statistical significance in the bivariable comparisons of the proportion of children exposed was paternal education of the families where the fathers lacked an academic education 819 of the children were exposed while among families where the fathers had an academic education 540 of the children were exposed paternal education was likewise the only significant potential confounder in the multivariable analysis of proportion exposed in the multivariable analysis of lhn paternal education was statistically significant additionally in the multivariable analysis of lhn a greater number of cigarettes smoked by parents was associated with higher exposure in the sensitivity analysis using tobit regression location was not statistically significant discussion the purpose of this study was to compare tobacco smoke exposure tse among children who live in smoking families versus those who do not as well as among children who live in smoking households with varying smoking locations we found that about a third of children of nonsmoking parents were measurably exposed to tobacco smoke and roughly double that proportion were exposed in smoking families among smoking families a majority of children in all locations were exposed to detectable tse even when parents limited smoking to a porch a designated room in the house a window or the yard the location of smoking in and around the home was not significantly associated with child exposure implying that there is no smoking location which reliably protects children from tse in many israeli homes the finding that about a third of children in nonsmoking families were exposed raises questions about how this exposure occurred most of the families in this small sample reported that smoking was not allowed anywhere in or around the home including indoors on porches in yards or in gardens exposure may have taken place via numerous potential routes such as tobacco smoke incursion from neighboring apartments 32 individuals entering the home with residual smoke on them 33 thirdhand smoke that was deposited in the nonsmoking homes by prior occupants 3334 andor exposure outside the home at other peoples homes in cars or in public places the greater proportion of children exposed to tobacco smoke in smoking families relative to nonsmoking families indicates that parental smoking has a key role in child exposure regardless of where it occurs and that parental cessation should be encouraged the exposure is likely caused by a combination of factors including secondand thirdhand exposure parents may smoke in close proximity to their children see supplemental figure s2 smoking proximity is linked to increased child exposure 12 air quality inside the home as measured by pm 25 can last up to 5 h 35 misconceptions about how and when exposure occurs can lead parents to inadvertently expose their children 13 misconceptions can occur because 85 of tobacco smoke is invisible 36 and the sense of smell is unreliable 37 an additional mechanism for exposure is thirdhand smoke which is the residual smoke that remains after the cigarette is extinguished 33 thirdhand smoke exposure is caused by inhalation and by ingestion through the mouth or skin thirdhand smoke can remain in the home environment for days weeks or months and seep slowly back into the air over time causing child exposure long after the cigarettes are extinguished or smokers leave 33 matt et al 15 found that infants living in smokers homes were exposed to tobacco smoke through air dust surfaces and skin they also found that levels of nicotine on the fingers of mothers who smoked inside versus outside the home were similar suggesting that smokers themselves are a vehicle for bringing toxins to the infant regardless of restrictions on smoking location a study in a neonatal intensive care unit showed nicotine and carcinogenic tobaccospecific nitrosamine contamination in children of smokers and nicotine on the furniture of their hospital rooms also suggesting that contamination is transferred by the parents themselves 38 most families in our study allowed smoking on the porch we found that 618 of children from smoking families where home smoking was restricted to the balcony had measurable tse similarly bahceciler et al in turkey found that 676 of children whose parents restricted smoking to outdoor porches were exposed 21 children may be directly exposed if they are with their parents on porches when the parents are smoking parents could behave this way because they mistakenly believe that this protects children from exposure 13 in the case of completely indoor or partially enclosed porches this could lead to very high levels of contamination cameron et al found that an overhead cover in an outdoor space increased average exposure by about 50 39 lopez et al in a study of secondhand smoke exposure on terraces and outdoor areas of hospitality venues found that the highest levels of respirable particles in all outdoor areas were found in partially enclosed outdoor areas 40 indeed many porches in israel are entirely or partially within the perimeter of the apartment itself porch doors may often be left open in israels climate which is characterized by hot summers and mild winters a qualitative study in israel showed that some smoking parents described smoking on the balcony and leaving the door to the living room open 14 outdoor porches that are directly adjacent to the apartment may be small and completely enclosed semienclosed or open tobacco smoke may accumulate quickly and enter the home itself or a neighbors home smoke drift plays an important role in contamination sureda et al conducted a systematic review of shs in open and semiopen settings and concluded that high shs levels were present in smokefree indoor settings that were adjacent to open or semiopen smoking areas 41 the closer the smoking is to indoor areas the higher the contamination of the indoor air as measured by pm 25 a standard air quality measure other factors influencing smoke levels included wind speed and direction as well as partial enclosure of outdoor spaces brennan et al found that smoking in adjacent outdoor areas may compromise the air quality of indoor smokefree areas 42 edwards and wilson concluded that where free communication exists between outdoor smoking areas and indoor areas shs drift can often greatly reduce indoor air quality throughout the pub or bar 43 living conditions in israel may have affected the exposure of children from both smoking and nonsmoking families israel has a very high population density and most people live in multiunit apartment buildings 44 crowding in the home small dwelling sizes and community smoking levels 45 may contribute to high exposure levels because tobacco smoke incursion from outside the home affects many israelis even parental cessation will not completely protect children an israeli crosssectional study showed that 44 of israelis have experienced tobacco smoke incursion into their own homes with those of low socioeconomic status being disproportionally affected 46 this study has some limitations first the study of smoking families though it included objective tse assessment through biomarkers in 141 children had limited power to detect small differences in exposure the study of nonsmoking families was small and did not allow multivariable analyses second it is possible that social desirability bias affected the parents reporting regarding smoking in the home resulting in misclassification of the location of smoking even though the interviewers were present in the home at the time of the interview third we did not have information on the smoking habits of visitors to the home or on whether the children regularly spent time outside of the home with people who smoked or in places where smoking was common including in cars we did not have information on the possible confounders of tobacco smoke incursion from nearby apartments crowding in the home or small dwelling size neither sample was based on a random sample of the population finally it is likely that the effect of smoking in the vicinity of the home on child tse differs in different areas due to different architectural customs and local climates public health implications in order to protect children from tobacco smoke exposure consistent with current scientific evidence on smoke drift outdoors and indoors smoking should not take place anyplace within at least 9 m 47 of the home a child or in cars where children may be present porches that are indoors partially indoors enclosed semienclosed or directly adjacent to indoor living areas should be considered part of the home environment people should refrain from smoking in these areas parents will need substantial support to be able to make changes to better protect their children we recommend intensive campaigns to normalize the distancing of smoking from homes and children this information should be included in tobacco package inserts which have been regulated but not yet implemented 48 further recommendations for the temporary use of nicotine replacement therapy to maintain smokefree homes which have been made by the uk national institute for clinical excellence 49 and health scotland 50 should be considered for adoption and subsidized by the national basket of health services the governmentally approved plan for the decrease of smoking and smokingattributable harms in israel 51 which was approved by the israeli cabinet in 2011 must be updated to produce and swiftly implement a comprehensive tobacco control strategy such a strategy must include special consideration for the importance of protecting all children from tobacco smoke exposure whether it be from their own parents relatives neighbors or others conclusions most children in participating smoking families were exposed to tobacco smoke regardless of whether the parents restricted smoking to a balcony to designated indoor places such as in the window or to the yard to protect children from tobacco smoke in the israeli setting indoor home porches and outdoor porches that are small and adjacent to indoor living areas or enclosed or partially enclosed should be considered part of the home environment and subject to full smoking bans full protection of children from the damaging effects of tobacco smoke exposure is likely dependent on reducing smoking prevalence among parents in particular and society as a whole and on complete denormalization of smoking around others especially vulnerable populations such as children data availability statement the data are available from the authors upon reasonable request acknowledgments we thank the participants of the study supplementary materials the following supporting information can be downloaded at supplemental table s1 tobacco smoke exposure of children by socioeconomic and other variables supplemental institutional review board statement ethical approval was obtained from the helsinki committee of asaf harofe hospital the israel ministry of health and the tel aviv university ethics committee informed consent statement written informed consent was obtained from all subjects involved in the study

young children are particularly vulnerable to harms from tobacco smoke exposure tse this study aimed to compare tse 1 between children who live in smoking families and those who do not and 2 among children who live in smoking households with varying smoking locations the data came from two studies that were conducted concurrently in israel 2016israel 2018 study 1 a randomized controlled trial of smoking families n 159 study 2 a cohort study of tse among children in nonsmoking families n 20 hair samples were collected from one child in each household baseline hair nicotine data were analyzed for 141 children in study 1 and 17 children in study 2 using a logistic regression analysis exposed vs not exposed as per laboratory determination and a linear regression log hair nicotine we compared tse between 1 children in study 1 vs study 2 2 children in families with different smoking locations in study 1 balcony garden yard or other place outside of the home or inside the home designated smoking areas within the home dsas or anywhere a higher proportion of children living in smoking households were measurably exposed to tobacco smoke 688 compared to children living in nonsmoking households 353 p 0006 among children from smoking families 750 of those whose parents smoked in the house were exposed while 618 of children whose parents restricted smoking to the porch n 55 were exposed and 714 of those whose parents smoked outside the home including gardens and yards n 42 were exposed in univariable and multivariable models smoking location was not significantly associated with exposure the majority of children in smoking families were measurably exposed to tse even if smoking was restricted to designated areas in the home balconies orgardenyardother outdoor areas reducing population smoking rates particularly among parents restricting smoking to at least 10 meters from homes and children and denormalizing smoking around others are recommended to reduce populationlevel child tse and tobaccoattributable disease and death

introduction neisseria meningitidis is an important cause of meningitis and septicaemia in children and young people with complications including deafness disability or death most n meningitidis infections result in asymptomatic carriage rather than invasive disease most studies of invasive meningococcal disease find higher rates of disease in more deprived populations but the relationship with carriage is unclear 1 7 in the first 2 weeks of january 2011 six confirmed cases of invasive group b meningococcal disease were reported in two neighbouring towns from a single local authority area of cumbria comprising urban pockets of deprivation surrounded by sparsely populated rural areas cases had strains with two distinct pora sequence types contact tracing identified direct social links between only two cases in 2008 a cluster of five cases in the same area had prompted a previous investigation as part of the public health response we conducted a rapid meningococcal carriage study to estimate the prevalence of pharyngeal carriage of n meningitidis and associated factors the aim of this analysis was to identify social or other factors related to variation in meningococcal carriage in this population methods investigators from the local primary care trust and the health protection agency collected pharyngeal swabs and epidemiological data from children attending 24 schools in maryport and workington cumbria between the 26 september and the 21 october 2011 one small school with a large student intake from outside the area was excluded from the study all other persons attending local primary or secondary schools at the time of sampling were eligible for the study according to school rolls the study population comprised 3160 students in the 1118 years age group at four secondary schools and 3094 children aged 511 at 19 primary schools we estimated a required sample size of 602 secondary school children based on an expected strainspecific prevalence of 2 and precision of 2 and 338 primary school children based on an expected strainspecific prevalence of 1 a random sample of children selected with probability proportional to school size from school rolls using computergenerated random numbers were invited to participate children and parents were provided with an information pack and consent form respondents completed a questionnaire to record age sex residential postcode history of smoking or passive smoking contact with meningococcal disease recent antibiotic use number of residents in household number of rooms in house frequency of visits to pubs clubs discos or nightclubs and foreign travel returned questionnaires were checked for missing data and data were validated by double data entry using epidata software 8 statistical analysis was performed using r version 2152 9 neisseria meningitidis carriage prevalence was calculated overall and by town type of school age group gender and social deprivation score for categorical exposure variables prevalence ratios and odds ratios were calculated with x 2 and fishers exact tests to test possible associations with carriage for continuous variables the ttest or wilcoxon rank sum test was used to identify associations as preliminary multilevel models showed no evidence of clustering of prevalence within schools multivariable log binomial regression models were fitted to the data to estimate prevalence ratios initial models included variables identified in single variable analysis as associated with the outcome with a pvalue of 02 as well as possible confounding variables and were simplified by a backwards stepwise approach examining at each step for possible confounders possible polynomial and interaction terms were considered for each model when the simplest possible model had been reached valid consent was obtained from all participants as data were collected as part of an outbreak investigation no formal ethical review was required or sought all information was stored securely and confidentially microbiological methods a single charcoaltipped swab of the posterior pharyngeal wall was taken through the mouth from each participant and plated directly onto a selective culture medium designed for the isolation of pathogenic neisseria species 1011 training in direct plating was provided by the local hospital laboratory plates were immediately stored in warm boxes or candle jars and transported within an hour to the local hospital microbiology laboratory for incubation in 5 co 2 at 378c for 48 h colonies that were gram negative and oxidase positive were frozen and sent on to the phe meningococcal reference laboratory manchester uk isolates were subcultured onto a nonselective plate medium at 5 co 2 at 378c for 24 h coagglutination using inhouse produced rabbit polyclonal antibodies absorbed onto killed staphylococcus aureus suspension was used upon a heatkilled suspension of organisms to determine the expressed capsular polysaccharide serogroup the serogrouping reagent panel comprised as follows serogroups b c e x y z and w heatkilled suspensions of the isolates were also screened for serogroups a b and c by using murine monoclonal antibodies supplied by the national institute for standards and control in a dotblot elisa format the serotype and serosubtype of isolates were also determined in the dotblot elisa using nibsc meningococcal mab panel that included the following serotypes p3 results swabs and questionnaires were obtained from 469 participants at 23 primary and secondary schools between the 27th september and 21st october 2011 two hundred and eighty participants were recruited at primary schools and 189 at secondary schools the overall response rate was 50 the overall prevalence of n meningitidis carriage was 139 most n meningitidis isolates were not groupable nine were serogroup b two were y one was e and one was w serotyping serosubtyping and pora sequence typing of the diverse strains identified among carriers did not identify any of the two distinct strains detected in the cases under investigation meningococcal carriage prevalence was highest at 181 in the 37 years age group falling to 86 in 8 11 year olds and rising to 143 in the 12 years age group there was no difference in carriage between sexes there was a significant rising trend in carriage prevalence across national quintiles of indices of multiple deprivation score carriage prevalence fell from 177 in quintile 1 to 56 in quintile 5 tables 1 and2 summarize other factors examined for possible associations with carriage of n meningitidis or n lactamica in the single variable analysis only age and deprivation score were associated with carriage of n meningitidis our study found no association between meningococcal carriage and other putative risk factors including contact with a case of invasive disease prior antibiotic exposure foreign travel visits to pubs or discos sporting activities or mean household age of the 21 children reporting cigarette smoking 12 were from the most deprived areas whereas only one was from the least deprived area of the 54 children living in households where other household members smoke in the house 35 were from the most deprived areas whereas none were from the least deprived areas 81 participants were carriers of n lactamica prevalence was highest at 127 in the 8 11 years age group falling to 20 in the 12þ years age group two subjects had carriage of both n lactamica and n meningitidis there was no evidence of multiple carriage of different types of n meningitidis in single variable analysis apart from a borderline association with household occupancy only age was associated with n lactamica carriage 58 participants were carriers of moraxella catarrhalis only one participant had carriage of both n meningitidis and m catarrhalis according to a log binomial regression model adjusted for age a 1unit increase in imd score was associated with a 17 increase in prevalence of n meningitidis carriage 0330 table 3 only age was found to be associated with carriage of n lactamica discussion what is already known on this topic carriage of n meningitidis or n lactamica may be protective against invasive meningococcal disease for individuals 13 16 moraxella catarrhalis is a common respiratory commensal with the potential to cause upper and lower respiratory infections 17 which has been shown to share crossreactive carbohydrate antigens with n meningitidis and n lactamica but has not been shown to confer immunity 1819 age is known to be a key predictor of meningococcal carriage prevalence prevalence typically increases from 5 in infants to a peak of 24 in 19 year olds before decreasing to 8 in 50 year olds 20 25 invasive disease is commonest in younger age groups neisseria lactamica carriage is thought to be highest in the youngest age groups falling in subsequent years 20 numerous studies have shown an association between deprivation and the risk of invasive meningococcal disease but few have looked at deprivation in relation to carriage 1 7 in a study of school children aged 1118 davies 23 found greater carriage of n meningitidis among school children whose parents had manual occupations and suggested higher rates of smoking among children from lower socioeconomic backgrounds particularly girls as a possible explanation maclennan 26 found a significant unadjusted association between arealevel social deprivation score and meningococcal carriage in a study of teenagers aged 1519 which was not significant after adjustment for smoking it is therefore possible that deprivation is simply an indicator of a greater prevalence of more direct risk factors in particular smoking or passive smoking tobacco exposure increases susceptibility to bacterial infection 2728 and is an established risk factor for meningococcal carriage 22252628 33 smoking prevalence is higher among those of low socioeconomic status in the uk 34 overcrowding has previously been suggested as a possible explanatory factor linking deprivation to a greater risk of invasive disease 4 although one study found this was the result of confounding by smoking 1 simmons 25 found that greater household occupancy was associated with greater n lactamica carriage in a new zealand population main finding this study found deprivation to be one of the most important predictors of meningococcal carriage prevalence in a deprived area of england 8 months after a localized spike in cases of invasive disease caused by two distinct pora sequence types of n meningitidis no carriage of recently detected invasive pora subtypes was detected but an unexpectedly high prevalence of meningococcal carriage and a lower than expected prevalence of n lactamica was observed in the 3 7 years age group the prevalence of 181 observed in the 3 7 years age group in our study is higher than that reported in most of the 82 studies included in a recent systematic review 35 only two of the six cases of invasive disease occurring in our study area at the beginning of the year had occurred in this age group but it is possible for this age group to have been a reservoir of infection for other age groups what this study adds invasive group b meningococcal disease is an important public health problem causing significant morbidity and mortality in young people for which vaccines are still under development or evaluation 36 this study found a social gradient in carriage of meningococcal infection as vaccines against the meningococcus may prevent infection indirectly via effects on meningococcal carriage and transmission 37 the findings of this study add further evidence that deprivation is an important factor to consider in the evaluation of the effectiveness and costeffectiveness of the introduction of new meningococcal b vaccines and the development and implementation of immunization policies only a small proportion of children in our study reported smoking and there was no significant association between smoking and meningococcal carriage however most children reporting cigarette smoking or potentially exposed to secondhand smoke in the household were from the most deprived areas further work is required to determine the impact of smoking reduction on meningococcal carriage and disease our study found no association between household occupancy and carriage of n meningitidis but it did find weak evidence of a positive association between household occupancy and carriage of n lactamica limitations of this study it should be noted that prevalence and strain epidemiology were assessed at least 8 months after the six cases occurred and may therefore not reflect the situation in the previous meningococcal season carriage prevalence and strain epidemiology can change in a period of months 3839 this is a crosssectional study using an arealevel measure of deprivation it is not possible to definitively conclude a causal relationship between deprivation and meningococcal carriage from a study without individuallevel data on socioeconomic status as the aggregation of data may distort the observed relationship imd scores at lower output area level may not reflect the distribution of socioeconomic inequality within smaller geographical areas smoking may not have been accurately reported by children or parents because of social desirability bias whereby study participants underreport certain behaviours for fear of creating a negative perception of themselves finally the sensitivity of throat swabbing for detection of carriage of the meningococcus may be low and dependent on swabbing technique 40 although in this study we aimed to maximize sensitivity by training of swab takers and the use of direct plating onto warmed selective culture media as recommended by other authors 14

background deprivation is associated with an increased risk of invasive neisseria meningitidis disease but little is known about the relationship between deprivation and asymptomatic carriage of n meningitidis this analysis was conducted to examine the relationship between meningococcal carriage and deprivation methods as part of a rapid meningococcal carriage prevalence study conducted in west cumbria to investigate an apparent cluster of invasive meningococcal disease data were collected on lifestyle and social factors including arealevel indicators of socioeconomic status to identify factors associated with meningococcal carriagein a multivariable log binomial regression model adjusted for age lower socioeconomic status was significantly associated with higher prevalence of meningococcal carriage a 1unit increase in index of multiple deprivation 2010 score was associated with a 17 increase in meningococcal carriage prevalence 95 confidence interval 0330 age was the only significant predictor of carriage of neisseria lactamica conclusions living in a deprived area is associated with increased carriage of group b meningococcus deprivation is an important factor to consider in the evaluation of the effectiveness and costeffectiveness of the introduction of new meningococcal b vaccines and the development and implementation of immunization policies further work is required to understand whether deprivation has an effect on meningococcal carriage through other factors such as smoking

introduction the physical closure of university campuses around the world in response to the sarscov2 global pandemic instigated major changes in working practices and conditions for university staff while recent studies have considered the impact of a transition to remoteworking on academic staff caused by the pandemic scant attention has been paid to the impact on nonacademic andor paraacademic staff working in the third space of universities professional services arms such an oversight is not without precedent with much research literature on work in higher education settings neglecting study of the professional services yet those referred to in this article as professional services staff are a major constituent of the uk higher education community playing a significant role in the operation of universities as complex organisations universities in the uk as in other neoliberalised settings demonstrate isomorphic tendencies in their singleminded pursuit of productive outputs and positional gains that converge into a national brand the heterogeneity of their staff membership and the embeddedness of occupational stratification means however that the experience of recent and ongoing change affecting the higher education sector will be varied and diffuse as tends to be the case in marketcompetitive settings those disposed of a greater stock of capital and accordingly better insulated against the impacts of crisis work intensification labour exploitation and job insecurity will have experienced a version of change less arduous than those with inferior capital in the context of higher education as a prestige economy pss are characterised as less visible and thus less agentic institutional actors though their role expertise has become increasingly specialised in recent years as universities have adopted more explicitly corporate behaviours their knowledge contribution beyond a service function tends to be overlooked by academics and they remain culturally detached despite growing instances of work integration while this separation is prominent it is injurious to universities attempts to operate as agile and flexible and moreover humane places of work bridging these two cultures in universities may be theorised as a process of boundary crossing and of pss entering acclimatising to and inhabiting the world of academics and vice versa selfevidently some boundaries may be unyielding and not easily traversed others may be more brittle or porous and scalable in highly stratified work environments such as the university the former tends to hold a capacity to boundary cross may then depend upon the availability of a boundary object an event or phenomenon of shared concern that bonds two communities through their common interest and works as a catalyst of relational cohesion we propose the pandemic or more specifically the transition to remoteworking caused by the pandemic to be such a boundary object an experience shared by all those working in universities yet we would anticipate differently unlike their academic counterparts pss have historically been denied the privilege of working offcampus and from home instead opportunities for remoteworking as we will show have been piecemeal andor hardwon moreover while academics complain of the incursions of newmanagerialism and the corresponding diminution of their workbased autonomy this is arguably slight in comparison to pss as individuals working under the contiguous gaze and instruction of management such unequal treatment of academics and pss is also suggestive of unequal gendered representation in the uks higher education space where university staff demographics reveal gender bias and a majority of female workers occupying pss roles set against a majority of male workers occupying academic roles within the following discussion we consider the spatiorelational impacts of transitioning to remoteworking during covid19 as experienced by pss as a heterogeneous staff group within their immediate and wider professional services teams and in the context of their interactions with academic faculty moreover we identify and discuss wider professional and personal impacts to pss brought about by a transition to remoteworking we propose that an analysis of the relational impacts of emergency remoteworking through the covid19 pandemic will help steer what is currently a highly uncertain course for pss a vast majority of whom continue at time of writing to work from home and may only partially return in the longterm to any kind of precovid working format our findings thus provide a key contribution to existing and what will likely be prolonged discussions concerning the future postpandemic organisation of work within universities not only in the uk but internationally and other similarly large and complex public organisations we present a series of perspectives that talk to the impact of emergency remoteworking which reflect a dearth of consensus apropos the future organisation of work in professional service divisions first however we consider both the spatial reorganisation of pss working lives brought about by the pandemic as framed by a wider history of remoteworking one albeit that neglects pss and the implications of remoteworking for social connectedness as a major determinant of a successful work organisation the rise of remoteworking while the pandemic has focused a spotlight on remoteworking and its inequalities such concerns are not sui generis instead remoteworking practices have proliferated and normalised over the course of recent years and are attributed amongst other things to the reorganisation of labour into a knowledge economy technological connectivity enabling work to be carried out irrespective of spatial and temporal borders and demographic changes such as workforce feminisation and the increased participation of women especially women with child dependents for whom flexible and remoteworking practices are necessary social exchange theorists view remoteworking as governed by a principle of reciprocity where employee benefits of for example flexible working patterns are reciprocated to the employer by means of employees enhanced productive effort border theorists correspondingly argue that reciprocity leads to the imbrication of work and home role conflict and the collapsing of boundaries that protect employees from overworking and resultant injury to their health and wellbeing notwithstanding this reciprocal tradeoff a positive correlation is made between remoteworking and job enthusiasm and satisfaction felstead henseke for example report that remote workers are more favourably disposed to their employers and exhibit higher levels of organisational commitment than their conventionally sited counterparts which may be linked to more trusting managementemployee relationships enhanced autonomy for employees is also associated with increased productivity although the overall contribution of remoteworking to productivity gain is highly variable and differentiated by employment sector employees level of education and the extent of their domestic commitments and personal privilege yet while opinion of the contribution of remoteworking varies noises from both industry and government are that remoteflexible working practices will continue to feature prominently if mainly in hybrid form and remain highly relevant in a postpandemic milieu work as social connectedness since the onset of the pandemic and a transition to remoteworking in universities many members of the uk higher education community have spoken of their strong desire to return to campuses to see their colleagues in physical form and to enjoy again the kinds of social interactions virtual platforms fail to accommodate working remotely has been considered by many a long way second best to inperson interactions and its rapid transition is claimed to have contributed to employee disengagement and weakened social relatedness within organisations the bonds of social connectedness and emotional ties cultivated between coworkers often through informal and spontaneous interactions so crucial as durkheim claims to achieving collective effervescence and we might add critical solidarity may be difficult to maintain in virtual encounters where emotional readings between interlocuters are obfuscated by a poverty of communication cues lags and latency in connectivity and even the disembodying effect of blank screens yet emotions experienced through collective workbased interactions are argued to be indispensable to the formation and maintenance of group identity and function to ensure group stability thus a feeling of belonging and community within work contexts may be sacrificed where the cultivation of positive work relationships that underpin coworkers accountability to each other and their connectedness to their employer is undermined by the emotional sterility of teleworking moreover we might posit the difficulty of facilitating assemblies of larger groups in virtual spaces and orchestrating meaningful conversations that exceed dyadic interactions and a preoccupation with the profane in addition to the challenge of practicing social skills that are indispensable to the management and mentoring of staff given these multiple challenges it is perhaps not at all surprising to find some industry bosses attributing a situation of ongoing remoteworking to the depletion of employees social capital especially amongst those whose intraorganisational ties are weak nonetheless despite assertions that human beings are fundamentally and inextricably social and a perceived threat of physical distance denying their fullest social expression suggestions of remoteworking culminating in workers bowling alone may be unduly pessimistic and amaurotic to the affordances of virtual connectedness to social capital in fact there is a growing corpus of evidence linking the application of information communication technologies to the accumulation of social capital even in the milieu of employees whose onboarding has been exclusively online we might speculate therefore that online platforms are not so much wastelands of emotional interaction amongst coworkers as they are triggers of an emotional disposition uncommon to office settings bourdieu in such case is helpful in theorising the transition to remoteworking as disruption in the field of interaction within universities that is transformative to the habitus the evolving process through which individuals act think perceive and approach the world and their role in it of their staff a transition to remoteworking for pss in such terms also resonates strongly with what costa has previously documented as the changing experience of academics as digital scholars and a tension involving new and old dispositions within universities consequently we consider whether the spatial adjustments of remoteworking and a transition to what are presented as emotionally sterile virtual platforms have resulted in pss becoming further estranged from each other and their places of work or conversely and perhaps against the grain of popular expectation has such transitioning elevated the value of cooperation and provided new spaces for work convergence enabled workforce harmonisation and aided the social capital of lower status and marginalised institutional actors culminating in stronger trust relationships in the following pages we seek to test the efficacy of social connectedness when practiced at distance or rather virtual connectedness and what may be lost or gained by the spatial dissolution of those sitting centrally yet also in terms of power and agency sitting on the periphery of their institutions we also consider how virtual connectedness corresponds to the renewal or dissipation of trust in university governance specifically involving university managers and university staff and the potential therefore of remoteworking as socially empowering and reconciliatory or further estranging thus our study seeks to address how the covid19 pandemic has and continues to shape the working lives of pss in universities where traditional working practices have dissolved and been replaced with a new spatiorelational arrangement while it focuses on data specific to the uk higher education context the universal experience of emergency remote working during the pandemic for university staff means our discussion is salient to an international higher education community facing as many other sectors an at least partial remote working future through an online survey we have sought to establish answers to three guiding research questions rq1 what was the overall experience of pss working remotely during the covid19 pandemic rq2 what were the spatiorelational impacts of emergency remote working for pss during the covid19 pandemic rq3 what is the future of work for university pss methods data was collected via an anonymous online survey which was distributed in april 2021 and kept open for 1 month the target population for the survey was pss working in uk universities demographic questions determined whether respondents met this criterion those who did not were removed from the sample post hoc the survey was distributed via professional mailing lists social media and other online platforms and with the assistance of two higher education trade unions this convenience sampling method was not designed to capture a representative sample rather data was sought to illuminate general patterns and trends characterising the experience of uk professional services staff during the pandemic the online survey was designed and distributed via qualtrics survey questions took inspiration from previous attitudinal surveys of the impact of covid19 on higher education communities and piloted on a population subsample feedback was gathered and the questions were refined before the survey was formally launched the survey consisted of n 36 items including demographic and occupational questions closedended questions seeking participants experiences and opinions on the impact of covid19 on their role and openended questions what benefitsnegatives to your work life have you experienced as a result of the covid19 pandemic overall how would you describe changes to your working relationships as a result of the pandemic and what do you think will be the longterm impact of the pandemic on university professional services the large number of responses and average number of words for each opentext question confirm the engagement of respondents with the qualitative dimension of our study and the richness of the dataset the analysis of which forms the major contribution of this article descriptive statistics were employed to define overall trends in the population and to frame our analysis of the qualitative data openended questions were thematically analysed responses were read and coded by an initial researcher before being validated by the whole research team the average duration of survey completion once excluding outliers was 13 min 43 s sample in total n 4731 professional services staff completed the survey table 1 provides demographic information which reveals that respondents came from a wide variety of branches of professional services most coming from learning and teachingacademic support other more prominently featured pss branches include student support libraries and researchinnovationsenterprise 796 of the sample had been working in the he sector for more than 6 years seventyeight percent of respondents stated being in fulltime employment 89 on permanent contracts and 64 stated being employed in pre1992 universities the majority of our respondents stated having no caring responsibilities the sample features a gender bias with 711 female participation as we have already mentioned hesa data shows that 62 of the nonacademic he workforce was female in 20202021 when this survey was conducted therefore while our sample shows an overrepresentation of female respondents it mirrors a systemic gendered bias results we first present a summary overview of quantitative findings taken from the survey and guided by our core research questions this overview is intended as a framing device for discussion of our qualitative data which forms the bulk of the rest of the article we offer no substantive analysis of quantitative data for instance multivariate analysis preferring to save this for future discussion closed responses rq1 what was the overall experience of pss working remotely during the covid19 pandemic survey respondents were asked how the pandemic had impacted various aspects of their role while 66 stated that their role had become more demanding the majority said that their work hours had stayed the same fiftytwo percent said that working from home had made no difference to their ability to do their job while the majority said that it had made them more productive respondents were also asked how have changes in your work due to the covid19 pandemic impacted on your mental and physical health fiftyfive percent reported that the changes had a negative impact on their mental health while 50 reported a negative impact on their physical health respondents were also asked to rate the competency of your universitys senior leadership through the pandemic and the majority rated them as either extremely competent or somewhat competent rq2 what were the spatiorelational impacts of emergency remote working for pss during the covid19 pandemic respondents were asked how working from home had impacted on how they are linemanaged sixtytwo percent stated no impact while 23 of respondents stated being less closely monitored by line managers respondents were additionally asked about the impact of the pandemic on their working relationships with academic staff and their own team the majority stated that their working relationships with academic staff had stayed the same while 18 stated that they had improved and 26 stated that they had deteriorated similarly the majority of respondents stated that their working relationships with members of their team had stayed the same while 22 stated that they had improved and 31 stated that they had deteriorated rq3 what is the future of work for university pss when asked do you have any concerns for the future of your job 36 stated yes 44 no and 20 were unsure those who identified as male or who preferred to selfdescribe were significantly more likely to say yes whereas female respondents were more likely to say no respondents indicated that in the future they would prefer a blended approach to working from home fifteen percent would prefer to be exclusively homebased and 11 exclusively campus based open text responses we now turn to thematic analysis of qualitative data generated through our opentext questions and guided by our overarching research questions we do this so as to identify the relational benefits and drawbacks of remoteworking experienced by pss during the pandemic in the hope of plotting a pathway towards the organisational future of their work in universities qualitative excerpts are attributed with the branch of professional service gender and institutional contexts of each speaker the spatiorelational benefits of remoteworking we start with what our survey respondents identified as the various positive contributions of remoteworking including boundary crossing by pss both within and across institutional settings respondents began by discussing how remoteworking had helped to dismantle status hierarchies endemic to university working cultures and provided technologically facilitated and timeefficient opportunities for working with colleagues unavailable in a prepandemic milieu which were by extension observed as opportunities for critical reflection and professional growth remoteworking was observed for providing greater visibility and status to pss i have built more and better relationships by having online video calls with colleagues i would never usually see i feel there has been a levelling out in terms of hierarchy and opportunities to participate in things remoteworking was also viewed as transformational to meetingmanagement for pss allowing them to become more available and better informed yet concurrently more agile participants of meetings prioritising their time at points of specific relevance and interest our respondents thus attributed remoteworking to redefining the parameters of their interface with academics providing them greater exposure and thus potentially increasing their institutional capital and capacity to steer academic decisionmaking typically academics would not always invite research office staff to meetings because 75 of discussions are not relevant now they invite us and we can stay on the call whilst doing something else and listening in and just joining in the conversation as necessary similarly as academics are working more with research proposals etc on ms teams we are more included in conversations that otherwise would have happened in corridors this helps to pick up issues earlier while remoteworking was viewed by respondents as improving their availability to academics it was also seen as enabling increased participation by academics in fora led by pss comment was here made of the greater spontaneity fluidity and time efficiencies of remoteworking via virtual meeting platforms and the ease with which meeting convenors might multiplyattendance i now host meetings with academics remotely and have found these to be more effective than facetoface meetings usually the meeting can happen with a shorter notice period without needing to book locations etc multiple people can join the meetings and leave the meeting without causing distractions as would occur in a facetoface meeting a switch to virtual meeting platforms instigated by the pandemic was also credited by respondents as an important step for universities in terms not only of aspiring to build more cohesive internal communities but enhance connectivity between multiple institutions in looking to the near future and multiuniversity networks and open innovation networks respondents spoke of remoteworking as a catalyst for crosscampus mobility i work across 8 heis spread across the midlands one of the things i had been trying to implement was more virtual meetings to save on the time and cost of travelling for inperson meetings due to the travel restrictions put in place these meeting had to become virtual saving both time and money visibility was a recurrent theme for our respondents who spoke not only of remoteworking and a switch to virtual meeting platforms in terms of efficiency and capital gains but in terms of its humanising effect a window onto coworkers domestic worlds facilitated by virtual meetings was seen as an opportunity to suspend work personas and for pss to embrace the cognate risks and vulnerability of being seen outside of the office context and accordingly therefore to a different arguably more authentic presentation of self the albeit inadvertent shared presentation of coworkers nonworking lives typically hidden or else screened in office settings may be understood as a moment of revelation and emancipation from the choreography of performative work cultures that affect only partial selfdeclarations paradoxically therefore coworkers are seen to become through forced selfdisclosure more vivid and real and knowable to each other in the virtual space the virtual space may be thus rationalised as a locus of collective vulnerability engendering greater trust and cohesion amongst coworkers bared of their professional camouflage and in the strangely augmented reality of the virtual space where the intrusions of homelife are manifold and relentless children shouting doorbells ringing dogs barking coworkers manifest through a miscellany of fallibility not as pss colleagues but human beings here ostensibly a new form of relationality andor kinship emerges carried by emotions of empathy and humility and by recognition of coworkers shared humanity in the face of universal struggle i think working from home during a pandemic we all got a feel for each others lives outside of work everyone has become more understanding i think and kids popping into a zoom call is just the norm now we are seeing people as moms and dads sisters and brothers etc other than work colleagues the common experience of struggle operates as a unifying factor in these accounts through which tribal divisions may be seen to recede a compulsion for social differentiation wanes and the boundaries erected to assert and guard identities collapse far less a cause of separation remoteworking in our respondents accounts is valued for bringing coworkers closer together stimulating collegiality and shared resilience the team feels closer as we have had far more regular allteam meetings than we would have had on campus we have bonded in adversity the opening of home to the gaze of coworkers makes conspicuous the constraints of working lives and not just as relates to a homework transaction which most of the time in office settings may be hidden or intentionally nondisclosed instead coworkers struggles are seen to affect compassion and kindness a spirit of greater tolerance and even absolution is reported that defies the behavioural traits common to the university as a performance oriented and hyper competitive institution that champions individualism for some the technology underpinning their interactions is viewed as a tool of conviviality i think everyone now has a bit more empathy and patience in dealing with colleagues we all know this has been a difficult time and we are all aware that everyone is dealing with different challenges which i think has made everyone a bit more forgiving and flexible i feel like my relationships with all my colleagues have improved as a result of the pandemic as people are so much more grateful for help and expertise and the use of tools like ms teams has made these interactions much less formal than they would normally be the spatiorelational drawbacks of remoteworking the reconciliatory and remedial qualities of transitioning to remoteworking were not recognised by all our respondents some in contrast described a situation of dwindling contact even communication blackouts explained by interactions with colleagues becoming more formalised and less fun my team no longer speak to each other on a daily basis and even if i do get in touch with them i get short answers and its not the same as we dont seem to have the fun conversations we used to and things go unanswered entirely no longer being able to easily chat informally ie ask quick questions or make comments to colleagues nearby this type of communication can lead to other discussions and information being exchanged in other words communication between colleagues within our office has become as a of total communication more formal respondents also spoke of their hesitance in reaching out to colleagues where reaching out might be construed as an intrusion of time reflecting thus the intensity of remoteworking and the absence of natural punctuations the ebb and flow and diversions inherent to office life they viewed the unboundedness of remoteworking as necessitating more socially conscientious and disciplined approaches to their encounters with colleagues the decay of the home as a protected or offlimits space previously insulated from the incursions of work was seen by respondents to necessitate greater sensitivity and selectiveness in making demands of colleagues time respondents spoke for instance of not wanting to burden colleagues with additional online meetings necessitated by the lack of informal interactions im reluctant to contact colleagues as it feels too intrusive to keep calling them because they are working at home in such accounts working from home is represented as inhibitive to spontaneous and unscripted work interactions previously tolerated in the office as a communitarian space and designation of time collectively owned instead the home as a sovereign space and designation of time individually claimed and defended results in coworkers becoming more discriminatory andor restrained in pursuance of each others time consequently the home is conceived as a site of reduced access to and amongst coworkers where despite associations of informality and the potential of uninterrupted connectivity ambivalence apropos rights of access and illdefined etiquette results in workbased interactions becoming more formal and structured respondents spoke of remoteworking as domestic incarceration and linked physical immobility with social impoverishment living at work and being stuck in one place with no interpersonal human interaction is stressful and at times souldestroying we are hard wired for human connection and much of my work entails building working partnerships and alliances respondents also spoke of their experiences of being unable to disconnect from work pressures and of the inundatory nature of virtual platforms inhibiting anticipatory and reflexive work practices even causing them to consider leaving their posts without onward employment respondents like pss15 also expressed their view of remoteworking as an uneven reciprocal arrangement which provoked feelings of anxiety and a tendency to overcompensate for the alleged benefits of working from home i have sometimes struggled to keep my workspace divided from my home space and never feel like i can fully leave work behind at the end of the day use of teams is out of control i spend my day leaping between conversations im always on and available no time to think about what im doing just react react react the notion of 95 is obliterated as you feel you need to be on call or respond as soon as possible add in workrelated guilt and anxiety because you are at home and comfortable so you work harder are always available as you have no other barriers to protect you im not sure i can continue to carry on at the pace and intensity especially as it is likely to continue online for at least some of my role i have contemplating leaving without anything to go onto while respondents as previously discussed spoke of the contribution of remoteworking in challenging status hierarchies in universities they also described them having become further entrenched due to general work intensification caused by the pandemic managing the demands of work intensification for pss was seen to be especially problematic in the context of reduced work resources and staff capacity as universities in response to the economic challenges of the pandemic implemented cuts to their operational budgets such cuts were attributed to the souring of relations between pss and academics with the former inadequately equipped and becoming less resilient in handling the increased demands expectations and escalating ire of the latter our capacity is being reduced as contractors and fixedterm staff arent being extended at the end of their contracts and the recruitment freeze means there is no one to replace them having to bear the brunt of academic staffs frustrations is extremely challenging we have often been asked to do the impossible but when we explain that the technology doesnt exist were told that were incompetent or lazy and need to find a way to make it work the way that some academic colleagues talk to us is totally unacceptable but were just expected to take it yes academic staff are stressed and overworkedbut so is everyone else i have definitely seen an increase in rudeness in the tone of emails and demands from academic staff to professional services staff in the context of remoteworking and therefore distanced power relations there lies the danger that micro or indeed cyber aggressions directed towards pss become more commonplace and also potentially normalised where online moral disengagement proliferates without sanction the work abuses and inequities potentially suffered by pss as a subaltern constituency or as watermeyer and rowe have described a massive minority in universities are therefore prone to increase and particularly so where their work becomes rebundled into discrete online services which further subordinates their institutional status mostly i dont feel academic staff are colleagues anymore it feels like i am working in a shop and they are customers along with the students i think thats the way things were going anyway with a move towards administrators working in separate places rather like an oldfashioned typing pool and this has speeded things up also intimated in pss19s testimony is the debilitative impact of remoteworking on weak ties and the relational compartmentalising prevalent to virtual connectivity that denies the potential for serendipitous encounters that catalyse weak ties and the overall development of social capital spanning an organisations network of employees a hybridised future versus a return to the past over 71 of our sample of n 4731 respondents stated that in future they would prefer a blended approach to working a percentage that rises to 76 amongst female respondents only 11 of the same number sought a return to a precovid paradigm of full campusbased working in contemplating a model of hybrid working respondents addressed the opportunity cost of working from home in the context of campuses remaining the operational nervecentre of universities and inperson working remaining the preferred modus operandi at least from a management perspective they discussed the dangers of hybrid working in segmenting and therefore territorialising and tribalising the pss workforce into those who work from home and those who work on campus and the potential therefore for a fractured imbalanced and unequal community of workers i worry that there will be a division between those roles that can work from home and will be able to do so in the future and those roles that will need to be on site to carry out their roles this will need careful consideration by the leadership if working remotely becomes the norm how will they get involvedbe included in university life at all it is already so limited now conversely respondents addressed concerns of institutions reverting to precovid working practices having seemingly embraced the affordances of remoteworking while having identified drawbacks to working on campus they spoke of the benefits of remoteworking in corollary to the disadvantages of campusbased working moreover the disadvantages they articulated that once may have been tolerated are now viewed as anathema the experience of remoteworking has in such terms made visible the costs of precovid campusbased working lives and emboldened future imaginaries of work even as might exist beyond the university in fact the experience of remoteworking and improved work autonomy appears threatened in respondents accounts and their anticipation that freedom to work during the pandemic will be displaced and erode with the reassertion of managerialism over their working lives i am concerned about being forced back to working on campus in an unsuitable office and that this will mean i will lose any of the improvements over the last year its actively made me think of changing my job to something more local should this be the case im concerned that the senior leadership team will expect all staff to go back to working on campus as we did prepandemic the pandemic has shown me that this is not tenable for my mental and physical health in the future and i will need to look very seriously at leaving my job to work somewhere closer to home if suitable blended working arrangements are not put in place discussion our findings reveal a picture of unequal disruption both positive and negative to pss brought about by a transition to remoteworking which complements the variability of a wider workforce response working relationships for the most part seem to have remained the same though there is evidence of remoteworking both improving and deteriorating pss working relationships with academics albeit the latter is more conspicuous the extent of their boundary crossing as facilitated by remoteworking appears thus only partial while a clear majority of respondents declared that their work has become more demanding just under half identified productivity gains from remoteworking reported impacts on respondents mental and physical health are mainly neutral and while respondents declare negative impacts over 20 of our sample reported positive impacts associated with remoteworking while some surveys highlight the deleterious effects of remoteworking on mental health our respondents suggest by comparison that campusbased working is no panacea a view confirmed by prepandemic analysis of mental health amongst uk he staff which found that pss accounted for the highest number of referrals to occupational health services for 1 3 pss as many academics the pandemic appears to have focused minds on the physical mental and financial toll of commuting to work and the subsequent relief brought from being able to work from home while also recognising the value of more flexible working conditions to a diverse work demographic and universities fulfilling an environmental commitment being able to work from home offers more flexibility especially for people with young children this may enable more new parents to remain in full time employment rather than dropping to part time hours and therefore support career progression for new mothers in particular identifying that all services can be provided when working from home has also highlighted the lack of need for office space transport therefore hopefully supporting the universities to become more sustainable yet concurrently the challenges of managing remoteworking with caring responsibilities while addressed is not nearly so prominent within our respondents qualitative accounts though we note a minority of our sample declare caring responsibilities particularly when compared with the testimony of uk academics who have spoken much more extensively of the collateral damage of working from home with child dependents in fact our survey evidences little discussion of how nor immediate indication that spatiorelational changes have been unequally experienced by pss controversially we might consider pss as particularly resilient in managing a home and work nexus a resilience built from theyre being accustomed to inflexible and rigid working practices working away from what may be frequently large openplan office environments is also identified as beneficial to productivity and providing insulation from office politics curiously while a premium tends to be placed on inperson workbased interactions remoteworking is championed by many of our respondents as an enabler of more positive work relationships we find thus similarity with other studies of remoteworking which evidence its effect in both relieving and escalating stress our respondents also appear to have good faith in their senior leadership a finding directly at odds with survey findings of uk academic staff unlike academics whose professional identity is linked to discipline and scholarly community less than institutional affiliation pss arguably possess a stronger institutional attachment as a result of their jobs being more static less mobile and more directed by management they are by comparison a professional cadre of third space workers close in character to what tierney describes as members of a congenial university that exhibit high managerial deference and limited contribution to governance we might assume then that pss as occupiers of the third space who prepandemic were already outside looking in would find that their limited influence on institutional governance in a remoteworking milieu to have further slipped conversely it might be the case that their virtual connectedness though in ways discussed socially inferior would actually enhance their social capital and powers of advocacy what we see from the qualitative accounts of our survey respondents is that a transition to remoteworking for pss has benefitted their social capital and availed new spaces of convergence and opportunities for influence building the basis for stronger trust relationships in universities and beyond trust relationships have in such instance cultivated not only by pss becoming more institutionally prominent via virtual connectedness but by pss exploiting remoteworking as an opportunity for greater professional autonomy in fact the potential of a return to campus working is rationalised by respondents as antagonistic to the trust gains provided by the pandemic however such a positive disposition to remoteworking is not shared by all and there are those amongst our respondents who are dismissive of trust gains and who view the workplatformisation of pss as an extension of servitude to their academic counterparts the potential of trusting relationships in the university is consequently found caught in the balance a transition to remoteworking however partial demands a new paradigm of workplace engagement and interaction particularly involving university leadership or eleadership and rankandfile staff this may be challenging yet also advantageous for pss who through an embrace of virtual connectedness can transcend penalisation by status and social capital common to the campusbased experience our survey of pss points to the potential of virtual connectedness in generating trusting relationships within universities and by extension a better integrated harmonised and we would add happy institutional community moreover we find identified benefits of remoteworking to establishing and sustaining professional networks that exceed the isolated campus and complement ideas of virtual work environments enabling global connections and interactions it may be that much of the success of virtual connectedness through the pandemic is attributable to relatedness and the extent to which coworkers have become better known to each other beyond office confines and have discovered points of commonality and adopted prosocial behaviours in the face of extraordinarily adverse conditions our survey findings like other recent studies consequently challenge assumptions of the harm caused by physical distancing to social connection and even demonstrate that a transition to remoteworking can be remedial to the isolation and loneliness experienced by some pss in campusbased settings however our analysis can go further while we have provided first sight of the experiences of pss in uk universities during the pandemic more can be achieved by identifying and analysing commonalities and divergences of these experiences as distinguished by role type and institutional setting furthermore we recommend an investment in longitudinal internationally comparative and more explicitly qualitative research to provide an ongoing deep dive into the lived experiences of pss as universities continue to calibrate their working practices in a period of what will likely be prolonged postcovid recovery and incremental transformation conclusion while the longterm future organisation of university pss is unclear we can at least recognise the emergence of a new narrative of work in universities given impetus by the pandemic as a boundary object and which talks to integrated and agile forms of working with the potential to transcend the boundaryblocks of statusbased traditions in what we have presented as the emotional void of virtual connectedness status and superiority are as valueless as digital etiquette is vague workbased polarisation may therefore potentially decline where spaces of ritualistic and performative interactions recede and give way to new spatiorelational dynamics arranged on trust which help to dismantle role prejudices and ameliorate role recognition however despite the disruptions of a transition to remoteworking caused by the pandemic the university as a field of interaction may in the longerterm prove resistant to any substantive reorganisation of its professional services the boundary crossing potential of remoteworking may remain untapped in the immediate and postpandemic contextwhenever the latter arrives an opportunity for a new kind of habitus may thus pass while there is willingness for a new model of work the pandemic appears not to have quite delivered the threshold moment to see it through a spatiorelational value change is shown to be nonconclusive and though many gains from remoteworking are apparent they may not prove sufficiently compelling in the longrun to defeat the innate conservatism of universities and the subjection of pss to academic patriarchy

the covid19 pandemic has been the source of largescale disruption to the work practices of university staff across the uk and globally this article reports the experiences of n 4731 professional services staff pss working in uk universities and their experiences of pandemicrelated work disruption it specifically focuses on a transition to remoteworking as a consequence of social restrictions and campus closures presenting both quantitative and qualitative findings that speak to the various spatiorelational impacts of pss working at distance from university campuses these survey findings contribute to a new narrative of work organisation in higher education which addresses the potential of remoteworking as a means for boundary crossing social connectedness and trust relationships in universities in the immediate context and strongly anticipated postpandemic future

introduction as the new order regime fell various important events occurred in indonesia one of which was violence against minority groups minority groups have always been in a weak position and have become natural targets of genocide and persecution in modern era which is considered as a period of relative tolerance and rationality we also witness that minorities are sometimes the targets of discrimination and repression various acts of discrimination committed against minority groups have resulted in violations of human rights and crimes against humanity in the context of the right to freedom of religion minority groups apparently have not received serious attention from the top this is evidenced by the many minority rights that must be fought for minority groups are often neglected or underrepresented in the media most minority groups do not have a role in television programs minority groups are often misunderstood through the prejudices held by the majority ethnic minorities are generally portrayed in the media negatively so that the rights of these minorities are ignored media is a tool used today through the media we can interact with other individuals there are various kinds of media for communication this is of course adjusted to the individuals ability to access the media international journal of social service and research ijssr page 486 media technology greatly impacts the activities of practitioners and journalists in enhancing good cooperative relations the position of the indonesian mass media as a social institution in relation to society is very important where the position of the media has a force that can be calculated to bring society to a better standard of living media relations or media relations are relations that are built and developed with the media to reach the public to achieve individual or group goals the general objectives of media relations are 1 increasing awareness of individuals and groups 2 changing public or societal attitudes 3 encouraging actions that support the interests of groups and organizations the existence of the media is now a necessity for society as social beings people must interact whose capital is communication communication in todays modern era is very dependent on technology print analog and digital broadcasts as well as both fixed and mobile telephones as well as online connections are also increasing so that everyones dependence on the media makes that person want to access the media at any time to fulfill their information space media has been proven to have a significant influence in the real world related to minority issues such as individual attitudes the rights of certain groups many research results of scholars have described how the media and minorities cover issues related to the same problem this issue becomes a hot topic of discussion wahhabism first entered indonesia in the 1980s the arrival of wahhabism to indonesia was due to the main encouragement of the establishment of the lippia institution which lippia is a branch of imam muhammad bin saud university riyadh in indonesia then the lippia alumni after returning from arabiya studies they conveyed their dawah regarding salafi and wahhabi teachings in the community where they live lippia itself was formed thanks to funds from saudi arabia apart from creating salafi wahhabi dakwah cadres saudi arabia also routinely provides scholarship assistance every year to indonesian students to study in saudi arabia in indonesia the wahhabi school is growing and developing well because the indonesian government does not question the existence of this school of thought thus it is considered that media relations are very important in fighting for minority rights to the existence of a group the rights that can be asserted by these minority groups are the right to internal restrictions the right to external protection internal restrictions relating to rights that may be granted by a group to its members aim to prevent the group from destabilizing meanwhile external protection relates to rights that may be granted by a group to the wider community it can be emphasized that the rights of minorities in indonesia are in the form of general rights of citizenship and special rights as citizenship in relation to this problem what is discussed in this article is examining the relations of media and minority groups to the existence of wahhabism in indonesia methods the study in this article uses the library research method which according to websters new international dictionary research is a careful and critical investigation and searches for facts and principles a very clever investigation to determine something in library research more than serving the functions mentioned to obtain research data the characteristics of the authors library research are not going anywhere except that they only deal directly with materials and sources that come from the library strictly speaking library research only limits research activities to the process of searching collecting library collection materials without the need for field research the materials needed in this research are in the form of books journals and library archives related to research problems as well as documentation historical materials collections manuscripts all of which have been classified according to research needs the steps taken in this study are preparing completeness primary and secondary sources in the form of materials related to the articles studied in the form of books and articles from international online journals then developing a framework by classifying the materials what is obtained is in the form of online books and articles reading and recording books and articles related to the study problem under study to be summarized as needed material according to the problem finally followed by the process of analyzing data as the findings of the study results concluding the study results in the form of findings figure 1 library study work steps results in analyzing the problems in this article a theoretical conceptual framework is developed which is used as a measurable systematic and objective analytical tool to look at the relations of the media and minority groups towards the existence of wahhabism in indonesia the concept of media relations is media relations with all community groups media relations play an important role in development media relations function to unite likeminded groups to articulate needs put pressure on the government thus the function of media relations places the practice of public relations with the government in achieving development goals in a 1969 editorial in television quarterly communications scholar cedric c clark writes that minorities often experience predictable stages of treatment in media portrayals especially on television clark suggests there are four stages of minority representation not recognized that certain minority groups are not recognized by the media mockingly certain minority characters are portrayed as stupid silly lazy irrational or simply ridiculous in egulations certain minority figures are presented as enforcers or managers of dominant group norms and respect the minority group in question is described as no different from other groups the reform period gave birth to press freedom in 1999 the ministry of information soehartos state apparatus for media censorship officially facilitated media liberalization this encouraged the rise of imported films literature fashion and music which sparked a moral panic among many organizations and activists muslims who consider the representation of a hedonistic lifestyle as a product of westernization and secularization media liberalization makes the media a creative space for society so that media relations are now an important thing in the continuity of peoples lives the concept of a minority group is etymologically a minority is the lesser part or number or the number that makes up less than half of the whole thus minority people say that they are a minority because they are not part of the majority members of minority groups are different from other groups depictions of minority groups are more likely to be presented as different groups in customs behavior completely with distinctive differences the term minority refers to various definitions where each definition regulates policies on how to deal with minorities in 1950 the un human rights subcommission defined minorities as a nondominant group in a population that has and wants to preserve ethnic religious traditions or characteristics or a stable language that is very different from the others in a study revealed that discrimination is one of the significant sources of identity threats that often motivate minorities to avoid the majority a group of citizens of a state constituting a numerical minority and in a nondominant position in that state endowed with ethnic religious or linguistic characteristics distinct from the majority of the population are in solidarity with one another mutually motivated implicitly by the collective will to survival goal is to achieve equality with the majority in facts and law from this definition there are several problems faced by minorities between the various types of minorities and the problems they face such as differences in the types of religious minorities that are different from the problems faced by racial minorities but basically the two problems faced by these minorities are demanding the state to provide equality of minorities as felt by the majority in this case achieving equality with the majority can be interpreted as a reference to individual rights without considering the collective rights of minorities and thus such a policy of strengthening individualism can deliberately violate what has been the main goal of minorities to preserve their collective will there are several types of minorities in the world first national minorities such as israeli arabs who happen to be the majority in other countries second stateless national minorities such as the kurds in syria and turkey who have their own unique language aspire to establish their own state major religious minorities such as sunni muslims in india who form the majority in other states the four minor minorities who happen to have their own state such as jews russians who feel affiliated with and even protected by the state of israel fifth there are racial minorities such as africanamerican minorities in the united states and europe who face their own types of racial discrimination the six minor religious minorities such as the druze in syria or the yazidis in iraq media diversity originates from cultural diversity and cultural practices this relates to smallscale specific empirical studies on the media or certain minorities which are major issues in debate among society today in this case the media is directly involved in voicing minority rights the results of the study show that the fertility of minority groups assumes that often with assimilation going on fertility between the majority and the minority will be covered while the difference between the majority and the minority usually occurs as a temporary phenomenon and is often interpreted in terms of the social demographic economic characteristics of the minority group it is this difference that makes the rights of the minority neglected the position of religious minorities muslim minorities numerically the status of a small groupminority produces forms of identity that differ specifically in their positioning in relation to the majority in fact without realizing it the minority position has had a lot of influence in contributing thoughts in the fields of norms religion politics economics social and culture the influence of muslim minority status on their identity and politics has been established in scholarly work muslim national leaders began to reverse an earlier process of religious change marked by a strong wahhabi salafi rebellion against the established sufibased order since around the 1190s muslim and islamic identities began to change with muslims identifying more closely with their religion at a glance muhammad ibn abd wahhab was born in the ujainah village the eastern region of saudi arabia his father was a qadi he obtained knowledge in fiqh and other islamic sciences then he migrated to the hijaz in this country muhammad ibn abd alwahhab obtained religious knowledge from the scholars in mecca and medina after a long time demanding that he return to his homeland and then teaching his understandings especially regarding knowledge it was from here that he began to have many followers many of whom came from outside ujainah even though he received many challenges including from his own family because his teachings caused a lot of commotion he moved to dariah a hamlet where muhammad ibn saud lived who had accepted the wahhabi teachings and even became its protector and broadcaster it was from this support that the teachings of alwahhab spread and became stronger because a theoretical person he always develops his thoughts and finally in 1773 he and his followers were able to occupy riyadh and in 1787 he died but his teachings still live and take the form of a stream known as wahhabism alwahhab the founder of the wahhabi movement is very prominent in saudi arabia he is an islamic figure who was very influential by the religious experience of ibn taimiya in particular and the hanbali school of thought in general therefore it is not surprising that in his movement he focuses a lot on purifying the faith in indonesia the term wahhabi is used in an inappropriate way while it can be used for individuals and organizations that follow theological teachings and abdalwahhab it is more general in a much broader sense for those who denounce interpretations of islam political change is only one part of a wider islamist agenda the development of the wahhabi salafi group in indonesia is supported by saudi arabia through an international agency channeling donations to the group so that they can develop their understanding in various ways one of which is by establishing madrasas and mosques with the aim that these madrasas will be able to convey messages to all indonesian audiences about their movement that this movement is the first and foremost saudi institution from which salafism was transmitted to indonesia this is where indonesian muslims know this movement wahhabi salafi also formed islamic foundations and media so that they could easily inform various useful activities to the community so that through media the community would become more familiar with this movement relationship between the media and minority groups towards the existence of wahhabism whether we realize it or not the phenomenon of the fall of the new order regime in may 1998 marked the arrival of an almost arbitrary euporia of freedom and for the media this is the first time for 30 years that the mass media has experienced almost unlimited freedom starting from mainstream media and alternative media appearing with those that carry religious messages from ekstream to elegant all the expressions of diversity are present to adorn the public and display the identity of its adherents but the representation of identity that appears in the symbolic order of the media must sometimes be understood as a social construct or ideology that fights behind journalistic practices or media performance in the context of islamic media the media plays an important role as a mouthpiece for alternative discourse as well as a symbol of resistance to the dominant and hegemonic ideology any information conveyed through the media will be able to change public opinion the presence of new media not only brings change but is also a challenge one of the existence of media ethics such as there are various hate speeches directed at minorities for this reason it is important for minority groups to establish good relations with the media because the media is considered capable of being a place of defense and protection for minority groups based on a number of literature studies that minorities need to get protection through the media in the form of establishing relations between the media and minority circles the wahabi movement is sometimes also associated with salafist groups that refer to salaf clerics wahabi or salafi marked the movement of islamic conservatism this movement is associated by some circles with various radical movements considering that its approach is often cendrung to fictionalize or silence others so the term wahabi as a pejorative form a term that cendrung contains negative meanings relations with the media are not often classified as a management function in public relations establishing and maintaining relations with the media is a very important activity most texts on media relations show a positive relationship between the media and minority groups as seen from the messages conveyed by the media about minority groups proven information that is conveyed openly and armed with honesty so that the media is believed to be able to provide information on the existence of minority groups to the government toberpihakan media towards the fate of the muslim minority it has received full support that through the mediaside the government has recognized the existence of various islamic movements in indonesia that are in the minority group in this case felt by the wahabi movement which demands the state to provide equality of minorities as perceived by the majority in this case achieving equality with the majority can be interpreted as a reference to the rights of the individual without taking into account the collegative rights of the minority and thus such a policy of strengthening individualism can deliberately violate what has been the main goal of the minority in order to preserve its collective desires thus that the success of this claim of minority rights has been achieved which is marked by the existence of the wahabi movement in indonesia conclusion whether we realize it or not media relations and minority groups in the existence of wahhabism it seems that the media has experienced success in taking sides with minority groups wahhabism who feel part of a minority group in their success in building and establishing relations with the media wahhabis as part of this minority group are starting to be able to show success in bringing about new changes through the media of minority groups their rights have been successfully fulfilled namely to get equal rights with the majority without reducing and being able to preserve their collective will as evidence the wahhabi movement pioneered by muhammad ibn abd wahhab who came from the saudi arabian region in ujainah experienced has experienced success in developing his ideas about monotheism and has many followers and it is seen that the existence of wahhabis in indonesia is growing and developing well because the indonesian government does not question this ideology even though it is still seen in the media that minority groups have not fully gained a place in the media and are still neglected and minority groups are often misunderstood by the majority in the media with their success in building and maintaining good relations with the media minority groups will be able to regain their rights their right to return can be fulfilled

in the context of the right to religious freedom minority groups have not received serious attention from the upper class this is evident in the many minority rights that must be fought for minority groups are often overlooked or underrepresented in the media most minority groups play less of a role in television programs minority groups are often misinterpreted through prejudices held by the majority the position of the indonesian mass media as a social institution in relation to society is very important where the position of the media has a very power that can be considered to make a better living society the wahabi movement is sometimes also associated with salafist groups referring to salafist clerics earlier ulama wahabi or salafi marking the movement of islamic conservatism this movement is associated by some circles with various radical movements considering that its approach is often to fictionalize or silence others so the term wahabi as a pejorative form a term that contains negative meanings the study aims to find out relations of media and minority groups to the existence of wahhabism in indonesia library research method is used in this study from the findings in this article which uses a literature study the relationship between media and minority groups in the existence of wahabi it can be seen that the media has experienced media success in partiality towards minority groups wahabi who feel part of a minority group by building and establishing relationships with the media succeed in bringing about new changes through the media their guidance as a minority group their rights are successfully fulfilled

introduction the sixth national census data in 2010 show that the elderly aged 65 and above account for 887 which is 191 percentage points higher than that in 2000 changes in the age structure of the population indicate that the aging process gradually speeds up 1 many chinese elderly increasingly face the serious problem of the empty nest which indicated they live independently or alone according to the 2013 data by china national committee on ageing the number of chinas emptynest elderly carried on rising there were 99 million in 2012 and the number in 2013 would up to 100 million 2 this phenomenon has become an important issue in the aging process that cannot be ignored this study will sample the rural elderly living independently in wenzhou a relatively developed city in eastern china use scientific and reliable scale to measure their subjective wellbeing and explore its socioeconomic factors health conditions of the chinese elderly living independently the elderly living independently are people who do not live with their children or have no children studies on chinese rural elderly living independently are relatively extensive the causes of emptynest phenomenon are very complicated and multifaceted including the population migration due to the economic reform the strict onechild policy improvement of peoples life standard and the development of healthcare industry and so on 13 many chinese scholars have focused particularly on the case study of the pension problem 45 they consider the elderly living independently to have more problems in many aspects such as disease care life arrangement and health among others compared with the nonemptynest elderly particularly studies concerned about their mental health condition such as depression loneliness life satisfaction and quality of life many elderly living independently experience a high risk of depression it is indicated that the prevalence of depression in emptynest elderly is higher than that in nonemptynest elderly 6 some scholars conducted an investigation on the elderly living independently in rural areas and found that the determined prevalence of depression was high at 7446 much higher than that of nonemptynest elderly 7 others also explored the symptoms of depression in the elderly living independently in hunan province and found that the condition was worse in rural areas 8 it was reported that 3011 of the sampled elderly living independently in sichuan province showed anxiety or anxietyrelated symptoms 9 the elderly living independently who were more depressed were female living in rural areas and had cognitive impairment were in danger of suffering from depression loneliness is also common among the elderly living independently its found that the emptynest elderly or rural elderly had stronger feelings of loneliness 1011 loneliness was prevalent among the emptynest elderly in rural anhui province 12 they also had lower physical and psychological health scores weaker relationships with children and social support and higher prevalence of chronic diseases than nonemptynest elderly the emptynest elderly are more likely to have mental disorders and lower life satisfaction 13 the negative psychological phenomenon could be prevented or eased if the elderly living independently could obtain better social support and medical care the help from the neighbors offer could alleviate their risk being excluded from the society 14 the health or qol of the elderly living independently is worrying 1516 data from the national household survey conducted in 2008 and found that the elderly who living alone reported the worse healthrelated quality of life compared with that of the nonemptynest elderly or the elderly who lived with their spouses 17 the elderly living independently was less likely to consult doctors 18 this finding indicates the fewer chances for medical care and the lower levels of income and social support of the emptynest elderly the qol of chinese elderly living independently are found that their scores of vitality role emotional and mental health in the mental component summary were lower than those of the nonemptynest elderly 19 above literatures indicate the phenomenon that the elderly living independently have worrying mental health condition their distinctive living arrangement risks them on high prevalence of mental disorders therefore their mental health needs more special attention but as we can see many of the abovementioned literatures studied the negative moods morbidity and general health of the elderly few study the positive experiences or affects of the elderly from the aspiring perspective as far as we are concerned only few literatures explored their wellbeing such as the psychological wellbeing 20 this study intends to fill the research gap aiming at studying the swb of the elderly living independently in china subjective wellbeing swb is a broad category of phenomena that includes peoples emotional responses domain satisfactions and global judgments of life satisfaction 21 swb has three components life satisfaction pleasant affect and unpleasant affect the reason why measuring swb is popular is that that it can depend on ones own opinion to selfrate his her feelings which complies with the worldwide epidemic of individualism 22 swb is affected by many factors such as health income religion marriage age gender occupation and education among others as a scientific observation swb has been applied for an index to measure peoples satisfaction or happiness in a nation 2223 studies focused on the chinese elderly show that living alone is associated with low swb and living with their immediate families is associated with positive swb living in rural areas or alone is related to low life satisfaction and unpleasant emotional experience 24 family support and cognitive function are key factors to their qol 25 it is reported that social support and negative interactions could significantly affect the swb of the chinese elderly and lead to a depressive effect 26 an investigation in a relatively poor region in hunan province and found that education income and social support had unique and significant impacts on swb 27 above literatures focused on the swb condition or their factors of the chinese elderly but not the emptynest elderly or the elderly living independently research hypotheses swb is affected by many factors 28 among them sociodemographic variables such as gender age and so on are thought to be very important factors 29 the following is our first hypothesis hypothesis 1 the swb of the chinese rural elderly living independently has differences in terms of demographic variables chinas traditional family model is made up of three generations live under one roof it is considered this traditional model to be beneficial to the elderly in rural areas because it represents the fulfillment of a cultural yearning 20 the elderly who live either with their children and grandchildren or with their grandchildren had stronger feelings than those who live alone financial support from their children or harmonious family relations can enhance swb rural grandparents with filial children and harmonious families have high life satisfaction 30 support between generations can be beneficial to the psychological health of the elderly 31 it is indicated that the loneliness of the oldest old decreased with the presence of their children or the love of children 32 the feeling of fondness can be increased by the elderly keeping in touch with their children therefore our second hypothesis is as follow hypothesis 2 mental support from the children can enhance the swb of the chinese rural elderly living independently research objectives the chinese social pension system especially the social endowment care in rural areas is far from effective the elderly living independently face uncertainties in many aspects such as economic support social care and spiritual solace among others therefore the elderly living independently is therefore not only an issue related to specific families but also to the overall society the emptynest elderly issue is associated with the improvement of peoples qol and the longterm development of social harmony and stability studying the swb of the elderly living independently has theoretical and practical significance this study explores the swb of the elderly living independently in the rural areas of wenzhou a relatively developed region in china the study aims to provide evidence on the swb of the chinese rural emptynest elderly and to give suggestions to the government or social organizations on how to improve the swb of the elderly living independently it also hopes to provide a reference value for work on other parts of china and to further arouse the societys concern about the swb of the elderly living independently methods sample and procedures the data used in this article originated from the sample of the elderly living independently aged 65 to 95 interviewed by the research center for wenzhouese economy the elderly living independently were defined as people who do not always live with any of their children and those who have no children wenzhou is the capital city of the economic zone on the west side of the straits wenzhou has absorbed the most number of migrants from zhejiang province over the years but in the meantime the trend of ageing and emptynesting are also accelerating by 2015 the number of the elderly aged 60 in wenzhou will grow up from 10076 million to 12689 million proposing greater challenges to the social security industry for the elderly 33 the multistage stratified cluster sampling method is mainly used in this study first each region was randomly selected from three districts two cities and six counties three regions were then selected longwan district yueqing city and dongtou county second two villages were randomly selected all the elderly aged 65 to 95 in each village were taken as research objects only one elderly was interviewed in each household a total of 536 valid questionnaires were collected from the male and female participants measures this study explored the swb of the rural elderly living independently aged 65 to 95 who lived in wenzhou city each questionnaire was conducted through facetoface interviews between a trained social worker and the respondents the investigator read every item in the questionnaire in a neutral unbiased manner as most of the respondents were old and had relatively low education the investigator filled out the questionnaire accordingly after ensuring that the respondents understood the question and gave their answers independently the questionnaire has two components basic information and the swb scale basic information includes age gender marriage education number of children selfrated health income relationship with their children and social relationship among others memorial university of newfoundland scale of happiness there are many good measurements to measure swb the simplest one is the single item asking the respondents how happy or satisfied they are 34 the popular and common ones are the satisfaction with life scale 35 the positive and negative affect schedule 36 and so on but only munsh is particularly suitable for the elderly people many of its items are directed to the old 2837 kozma and stones 38 developed the munsh based on the life satisfaction index and emotional balance scale put forward by bradburn and beise 39 respectively this scale was first applied to the elderly aged 65 to 95 living in urban and rural areas and in elderly apartments in newfoundland its validity and reliability were higher than those of previous scales used to measure swb the revalidation was also confirmed 40 the munsh has been used since then in many countries to measure the mental health condition of the elderly including chinese older adults 41 munsh consists of 24 items 5 items indicate positive affect 5 items reflect negative affect 7 items indicate positive experience and 7 items indicate negative experience the answer yes is coded as 2 points the answer dont know is coded as 1 point and the answer no is coded as 0 point for each item the 19 th item presents the answer choices for present living place which is coded as 2 points and other living places which is coded as 0 point the 23 rd item presents the answer choices for satisfied which is coded as 2 points and not satisfied which is coded as 0 point the total score is computed b by the following formula swb pana pene the constant 24 is always added for the convenience of calculation the scores ranged from 0 to 48 points the higher the score is the happier the respondent the following are the criteria when the score is 36 or above the swb is at a high level when the score is 12 or below the swb is at a low level and when the score ranges from 12 to 36 the swb is at the middle level ethical statement the survey conducted with oral informed consent and the approval of the ethics committee of the university in compliance with the principles of the declaration of helsinki interviewers informed each respondent of their right to refuse to participate and of their right to refuse to answer any question both initially and during the course of the research results descriptive statistics the na and ne were considered to be negative before the validity and reliability of the scale are tested because the munsh includes both positive and negative experiences reliability tests were conducted on the 24 items of the four domains of the munsh the cronbachs alpha coefficient of the whole scale was 0823 which indicates that the questionnaire had good reliability the cronbachs alpha coefficients of the four domains were 0761 0782 0754 and 0821 respectively which indicate high reliability item internal consistency and item discriminant validity were analyzed to ensure the validity effect of the scale the pearson correlation coefficient was calculated among the 24 items and their corresponding domains as well as the other three domains the correlation coefficient between items and its domain should eliminate duplication only the correlation coefficient between the items score and that of other items that belong to the same domain was calculated when the correlation coefficient between the item and its domain was equal to or larger than 040 one successful convergent validity test was recorded when the correlation coefficient between the item and its domain was significantly higher than that of other domains one successful discriminant validity test was recorded the results showed that the correlation coefficients of all items and their hypothetical domains were larger than 040 the 24 convergent validity tests were all successful with a success rate of 100 out of the 72 discriminant validity tests 65 were successful with a success rate of 9023 overall the validity tests were good a total of 538 questionnaires were distributed and 536 effective ones were received the effective rate was 9962 in investigating the swb of 536 rural elderly living independently we found that they obtained low scores in pa pe and total swb score they obtained high scores in na and ne we scored the participants on the following variables gender marriage education number of children selfrated health condition income relationships with children social relationship among others variance analysis was conducted on the swb of the rural elderly living independently using different factors the rural elderly living independently was composed of 256 males and 280 females as indicated in table 1 the average age was 7623 ± 786 years old among the participants 265 respondents were aged between 65 and 75 years old 198 respondents aged between 75 and 85 years old and 73 respondents aged between 85 and 95 years old a total of 432 respondents had primary school and below education 79 had middle school education and 25 had high school and above education a total of 385 were married and had spouses 151 of them were divorced widowed or unmarried besides 132 elderly reported good health while 203 and 201 ones reported fair and poor health conditions most of the elderly have 2 and more children fair or low income and 61 of the respondents have rare relationship with their children the swb of these rural emptynest elderly had statistically significant differences in terms of gender age marriage education selfrated health condition number of children income and relationships with children among others impact factor of the swb of rural elderly living independently this study used a logistic model to analyze the impact factors of the chinese rural elderly living independently the logistic model used is the regression model that focuses on the twocategorical or multicategorical dependent variables explanatory variables can be nominal data or quantitative data as the swb in this study was an attitudeorientation sentiment classification question with certain orders a logistics model called proportion odds model with ordinal categorical explanatory variable was used to fully use and reflect this relationship hypothetically the format of the dependent variable y and its value in the proportional odds model is log it p y ≤j ð þ ð þ¼β 0 þ β 1 x 1 þ ⋅⋅⋅ þ β p x p where log it p y ≤j ð þ ð þ¼1n p y≤ j ð þ ð 1p y≤ j ð þþ an important application of the logistic model is the estimated odds ratio or is the ratio of the occurrence probability over the nonoccurrence probability of certain events it is used to analyze the advantages caused by the change in one explanatory variable and the effect of dependent variables the or of proportional odds model is or ¼ p y i ≤j ð þp y i j ð þ p y j ≤j à á p y j j à á the unknown population parameter estimation of the model commonly uses the maximum likelihood estimation methods because the logistic regression model is nonlinear the estimation results have consistency asymptotic efficiency and asymptotic normality the null hypothesis of the parameter estimation of the logistic regression model can be tested through the chisquare of likelihood ratio score and wald tests the goodness of fit of the model can be determined by the deviance and pearson criteria the parameter estimation and test process were conducted using sas 92 this study used the scores of the munsh scale to determine the swb of the respondents the swb scores 12 indicate unhappy 12 swb scores of 36 indicate fairly happy and swb scores 36 indicate happy gender marriage education number of children selfrated health income relationship with their children and social relationship among others were used as the independent variables the swb of the rural elderly living independently is a threecategorical dependent variable unhappy 1 fairly happy 2 and happy 3 therefore the format of the established proportional odds model is logit p 1 ð þ ¼ 1n p 1 1p 1 ¼ α 1 þ β 0 x þ ε i logit p 1 þ p 2 ð þ¼1n p 1 þ p 2 p 3 ¼ α 2 þ β 0 þ ε i where α 1 and α 2 are constant terms and β ∈ r is the regression estimation parameter vector p 1 p 2 and p 3 are the probabilities when the swb is 1 2 and 3 respectively maximum likelihood estimation methods can be used to conduct regression estimation to the swb model of the chinese rural elderly living independently the results of the parameter estimation are presented in table 2 the pvalues of the deviance and pearson criteria that determined the goodness of fit of the model were 09095 and 03991 respectively and both were over 005 therefore the goodness of fit of the model was relatively good the parameter estimation was significant at the 10 significance level in terms of the impact factors of the swb of the chinese rural elderly living independently as indicated in table 2 the explanatory power was relatively strong the absolute value of the parameter estimation represents the impact degree of each impact factor on the swb of the chinese rural elderly living independently moreover the symbol of the parameter estimation decides the impact direction of each impact factor on its corresponding swb the positive values represent the positive effect and the negative values represent the negative effects oldestold high school education no children in family poor income and rarely meet their children had negative impacts on their swb the remaining factors had positive impacts on the swb of the chinese rural elderly living independently the greater the or value is the greater the promotion effect on the swb of the chinese rural elderly living independently the or values of female middle school education married and have a spouse good health condition have one to two children fair income and sometimes meet their children were all above one this result indicates the great promotion impact on the corresponding swb moreover the swb of the rural elderly living independently with high school education was low and the feeling of unhappiness was strong people with high education had high expectations of the future the swb was established on the gap between the real results and the subjective expectations the greater the psychological pressure is the more negative the impact on the swb discussion the number of rural elderly living independently is rapidly increasing the elderly have become part of the vulnerable group in the society as they experience the gradual loss of physical and intellectual resources as well as a variety of chronic diseases the rural elderly living independently are weaker than the urban elderly living independently in the vulnerable group this study finds that the scores of the chinese rural elderly living independently in terms of pa pe and total swb are relatively low and that the scores in the aspects of na and ne are high their swb has statistically significant differences in terms of gender age marriage education selfrated health condition number of children income and relationship with children for example the swb declines with age and the swb of females is higher than that of males the elderly living independently who are married and have spouses have children and frequently meet their children and have a good income and selfrated health condition reported high scores of swb good selfrated health indicate they rarely suffered from the chronic diseases and good income guarantee their easy utilization to health services 42 in terms of education the swb of the elderly with middle school education is better than that of the elderly with primary school education however the elderly with high school education have the lowest swb further analysis on the main impact factors of the swb of the chinese rural elderly living independently shows that the factors have certain impacts on the swb among these factors oldest age high school education no children at home poor income and rarely meet their children have a negative impact on their swb the remaining factors have a positive impact the idea of raising children so the elderly will have someone to take care of them in their old age is ingrained in chinese rural areas for chinese the household environment and traditional cultures still affect chinese people 43 traditional living in their twilight years with their family is the only way for the chinese rural elderly children have an irreplaceable position in the eyes of the elderly especially in terms of spiritual solace and life care but now chins family household is changing from a larger unit to smaller size the living arrangements of the elderly are likely to live independently which also cause the substantial changes of the coresidence of the elderly and their children 44 there are studies found that though the elderly did not live with their family members their relationship can affect their life quality 45 according to family theory the elderly who have stepped into the emptynest period lose the social support and emotional communication because of the absence of their children and the stronger emotional cohesion with the children can strengthen the wellbeing of the elderly they encounter a new family social problems and individual health problems the elderly living independently feel lonely and isolated because of the lack of communication with their children they may express doubts regarding their existence and easily fall into a boring helpless state the longterm existence of these negative emotions can lead to the emptynest syndrome which results in the decline of the swb therefore we would like to propose some improve suggestions first the phenomenon of the rural elderly living independently should be alleviated the childrens awareness of raising the elderly in the family should be strengthened publicity and education work on respecting and raising the elderly should be launched extensively in the rural areas the responsibility of giving economic support life care and spiritual consolation to their parents should be emphasized to the children the children should bear the responsibility of economically and emotionally supporting the elderly to ensure that the elderly lead a life of relative quality the basic pension insurance system in rural areas should also be improved to ensure that the elderly living independently enjoy pension subsidies more economic support can help increase the swb so the elderly can avoid poverty and lead a relatively good life 46 second the community function in rural areas should be tested special care should be provided to the elderly living independently the traditional virtues in rural areas should be carried forward the neighbors and friends of the elderly living independently should offer some basic community care services such as the doing the housework and cooking among others professional workers can be included into the service system so that more professional services can be offered to the emptynest elderly third the mental life of the chinese rural elderly living independently should be given attention the public should be mobilized and organized to volunteer in the ranks of emptynest services and to fulfill the role of volunteers in the improvement of the rural elderly living independently the construction of rural community cultural sports facilities should also be promoted to provide places where the elderly can conduct social activities the community should hold sports activities that will be well received by the emptynest elderly this study has several limitations first it takes the rural elderly living independently in wenzhou city as the research objects wenzhou is one of the developed regions in china that benefits from advanced manufacturing this study holds a certain reference value for the other developed regions in china the regions where the economy is relatively backward especially those in midwestern china still need further research second the elderly living independently are a large vulnerable group further tracking studies should focus on their swb to influence the improvement of decision making and government work conclusions many chinese elderly increasingly face the serious problem of the empty nest phenomenon however few studies concerned about the swb of the elderly living independently this study employs munsh to explore the swb of the elderly living independently in rural areas of wenzhou a relatively developed region in china results indicate that age female low education poor health condition and income and divorce are negative impact factors but the childrens support can help to improve the swb the elderly living independently in rural wenzhou china have unfavorable swb therefore it is suggested that we should strengthen the childrens awareness of raising the elderly test the community function and highlight the importance of concerning about the mental life of the chinese rural elderly living independently authors of this paper all authors have read and approved the final manuscript competing interests the authors declare that they have no competing interests authors contributions yz rz and lz developed the questionnaire and study design supervised the analysis and contributed to the final version of the manuscript lz cf yw ql and hw assisted with the survey and data analyses and are the principal

background many chinese elderly increasingly face the serious problem of the empty nest phenomenon the elderly living independently also called emptynest elderly refers to elderly people living alone whose children left home however few studies concerned about the subjective wellbeing swb of the elderly living independently methods this study employs the memorial university of newfoundland scale of happiness munsh to explore the swb of the elderly living independently in rural areas of wenzhou a relatively developed region in china 536 sampled are randomly selectedthe results indicate that participants obtained low scores in positive affect positive experience and the total swb score but high scores in negative affect and negative experience age low education poor health condition and little income were found to be negatively correlated with swb the swb score of the elderly living with a spouse is higher than those who divorced or lost their spouse and the score of women is lower than that of men in addition the survey revealed that childrens support has a positive influence on the swb of the rural elderly living independently conclusions the elderly living independently in rural wenzhou china have unfavorable swb poor socioeconomic statuses are negative impact factors but the childrens support can help to improve special attention is needed to those with lower socioeconomic status and less childrens support

background globally new hiv infections have dropped by 38 since 2001 but there were 21 million people newly infected in 2013 and an estimated 22 million people who are not accessing lifesaving treatment 1 furthermore there are some countries where the hiv epidemic is growing where the number of people living with hiv has almost tripled in russia and ukraine the prevalence of hiv is one percent or higher in these countries the most common routes of transmission are injection drug use and sexual contact 1 high hiv incidence among idu attests to continued growth of the epidemic 23 in present day russia it is important to emphasize the activities in hiv prevention treatment care and support 1 antiretroviral therapy is available for everybody who needs it and there are national recommendations for choosing arvt drugs for different populations and situations the russian federation has conducted some sporadic research on the stigma of chronic viral infections in 2008 the russian public opinion research center conducted surveys on the awareness of russians about hiv infection and the relation this had to hivinfected people it turned out that if a family member became infected 19 of respondents would change their attitude toward them for the worst in the case of a housemate or a colleague at work the figure raised to 23 and 28 respectively 4 at the same time 4 of respondents would limit their communication with infected relatives to a minimum 14 would do so with a colleague and 23 with a neighbor most respondents would express strong concern if their child were in a group of hivinfected children or if the child were under the supervision of an hivpositive nurse 5 in russia the mental constructs of people relating to hivaids may differ from formal observations and epidemiological data it should be mentioned that homosexuality is stigmatized in russia and we do not know the real data regarding hiv in the homosexual population previous research has shown that in nursing schools students know of idu as being a main route for acquiring hiv but often believe that all homosexuals have hiv because it is a riskladen way for potential hiv acquisition there are guidelines regarding universal precautions and available personal protection equipment but nurses are taught ethical standards that support the rights of all patients to receive essential services in health care this therefore raises a disparity between taught knowledge and personal attitudes medical and nursing staff are the most important groups in the prevention of hiv therefore medical and nursing education must include updated information on hiv and aidsrelated issues the knowledge and attitudes of students towards caring for people with hiv or aids is thus of vital importance since they will develop into future health professionals additionally previous studies have shown that increased hiv and aidsrelated education has reduced negative attitudes toward plwha literature review internationally nursing students knowledge levels regarding hiv and aidsrelated issues have been inconsistent and differences have been noticed in various areas related to hiv and aids whilst their knowledge level has been reported to be good in european countries such as finland the uk turkey and germany 7 8 9 10 11 gaps and weaknesses have also been identified in the same countries quite poor knowledge levels and large knowledge gaps have however been reported in asia and africa in countries such as nepal and ghana the associations between background factors and knowledge levels in the field have been previously identified for example male students have been found to be more knowledgeable than female students 7 age has been found to be positively correlated with knowledge level among nursing students 710 some studies suggest that single students have a higher knowledge level than those who are married or widoweddivorced 818 contrastingly however some studies have found that married and cohabiting students have a higher knowledge level 10 if students had cared for a patient with hiv 810 or knew someone with aids then they were also likely to prove more knowledgeable 8 also students with less work experience tended to have a higher knowledge level of hiv and aids as did those with a higher level of education 10 apart from knowledge level concerns have been expressed about nursing staff s negative attitudes and care towards plwha 1920 nursing students attitudes toward plwha have been studied in different countries and attitudes have varied from rather positive 8911 to average 721 to negative 12131617 nursing students have been reported to be apprehensive about caring for plwha 822 and associations between background factors and attitudes have been identified earlier experiences of caring for plwha or other contact with them appears to have a positive influence on attitude a willingness to care for plwha has also been positively associated 918 homophobic attitudes vary across different countries and may be linked with plwha this was found to be the case in two studies students with homophobic attitudes were less willing to care for persons infected with hiv and those with aids 914 earl and penny 12 found high levels of homophobia among nursing students in the usa however some studies suggest that nursing students may in fact have less homophobic attitudes and or rather positive attitudes 8921 in a study by peate et al 9 older nursing students and students with more work experience showed a more negative attitude toward homosexual patients those nursing students who had previous experience with plwha had previously been asked to care or had already cared for plwha showed lower degrees of homophobic attitudes students who were more willing to care for plwha also showed more positive attitudes toward homosexual patients also students with children showed more positive attitudes toward homosexual patients than those who did not 21 it has also been seen that students with lower knowledge levels of hiv or aids tended to express more homophobic attitudes than those who had a higher degree of knowledge 89 a review of research studies concerning the attitudes of nursing students towards caring for plwha and their influencing factors was carried out and identified the following themes education and knowledge of hiv and aids fear of contracting hiv reluctance to care for people with hiv or aids homophobia stigma associated with hiv and aids it also reported that there is a reluctance on the part of some nursing students in specific regions of the world to provide care for plwha 6 however the focus of this article is on russia in eastern europe the number of people with hiv has almost tripled since 2000 1 nurses and nursing students increasingly care for people infected with hiv people with aids and people who are at risk of contracting hiv nurses should therefore be knowledgeable about hiv infection and aids in order to be able to provide proper care for plwha the nursing program in russia in russia nursing education is provided by way of a 3year course the qualification awarded is that of qualified nurse the nursing curriculum includes an infectious diseases module where hiv infection and related issues are incorporated into the training program there has been little research on russian nurses neither has there been much research on russian nursing students and especially regarding their knowledge and attitudes towards plwha in russia hence this study provides important new information in this area of study purpose and research questions the purpose of this study was to describe nursing students knowledge level regarding hiv and aids and their attitudes toward plwha the ultimate goal was to compile a knowledge base reflecting the present situation in order to develop this aspect of nursing education the research questions were as follows 1 what is the level of hiv and aids related knowledge among nursing students 2 what associations can be identified between nursing students background factors and their level of knowledge regarding hiv and aids 3 what are nursing students attitudes towards plwha and homosexual people 4 what associations can be identified between nursing students background factors and attitudes towards plwha and homosexual people methods data collection a purposive sample was drawn from 3 out of 10 nursing schools in one metropolitan city in russia in a geographical area where the prevalence of hiv and aids is recorded as high eg the hiv prevalence among idus has been reported to be as high as 50 the data was collected between may and april 2010 after receiving permissions from all of the study institutions according to their research standards graduating nursing students completed the questionnaires during their prepractical training period after completing the questionnaire the students returned the completed questionnaires to the research assistant the questionnaires were offered to 107 students and 102 students participated all of the students were due to graduate after 3 or 4 years of education depending on their previous basic school level instrument the data was collected using a questionnaire originally developed in the usa 23 and modified for use in europe by finnish nursing scholars the modified version has been used in finland the uk germany estonia and lithuania the instrument has been translated by translationback translation techniques 24 into finnish german estonian russian and lithuanian the original instrument developers and medical experts have checked the continued validity of the updated instrument where for example the term hiv was used instead of aids the questionnaire consisted of three sections a background questions b knowledge questions and c attitude questions the background questions consisted of 14 demographic and other background items including age gender marital status children time spent in nursing education knowing a family member or anyone else who had hiv or aids whether the informant had ever been asked to care for a person with hiv or aids had ever refused to care for a person with hiv or aids and whether they would be willing to care for a person with hiv or aids the next section consisted of a knowledge test with 33 questions about the nursing students knowledge of hiv and aids this included questions about hiv and aids immunology modes of transmission disease etiology risk groups and universal precautions possible responses were 1 true 2 false 3 dont know lastly 35 items focused on nursing students attitudes towards plwha and the disease itself the attitude scale had two subscales general attitudes and homophobic attitudes the general attitude subscale had 26 items evaluating nursing students attitudes toward groups such as intravenous drug users prostitutes etc and items concerning their fears about personal safety hopelessness and their preparedness to meet the needs of persons infected with hiv the homophobia subscale had nine items measuring nursing students attitudes toward homosexuallyoriented people responses were given on a 5point likert scale a score of 5 indicating the most positive attitude the instrument has been found to be reliable and valid in previous studies cronbachs alpha values for the attitude scales have ranged between 086 and 095 21 in this study the cronbachs alpha values were found to be 087 for general attitudes and 092 for homophobia ethical considerations permissions to conduct the study were received based on the protocols of the educational institutions concerned as no patients were involved a statement from the ethical committees was not needed students gave their oral consent which was further implied by their voluntary completion and return of the questionnaire students anonymity was guaranteed data analysis the data was analyzed using pasw statistics version 18 the demographic variables were described using descriptive statistics for computing the level of the students aidsrelated knowledge all correct answers were recorded as being equal to while all incorrect and dont know answers were recorded as equal to each respondents scores were totaled and individual scores were analyzed using regression analysis nursing students general and homophobic attitudes were described using descriptive statistics to calculate the average scales of attitudes responses from each respondent were totaled and divided by the amount of responses the effect of demographic variables on the average scores of general and homophobic attitudes was analyzed using regression analysis only statistically significant results have been reported in results results nursing students knowledge level the mean of the correct answers for the 33 item knowledge test was 198 points in the following results we present at item level some results which are thought to be among the most relevant for a nursing student to know when entering nursing practice the study showed that students knowledge of transmissionrelated issues varied widely about 60 of students knew that hiv is not found in large amounts in saliva tears and urine almost 70 of the students knew that hiv cannot be transmitted by casual contact 62 of the students knew that condoms do not give 100 protection against contracting hiv through sexual practices 15 of the students reported the opposite somewhat shockingly 11 of the nursing students thought that all homosexuals had hiv percentages of nursing students knowledge of hivaids the students knowledge of hivrelated precautions in hospital could have been better 45 correctly identified that there is no good evidence that hiv cannot be transmitted to a fetus before birth only 36 of the students knew that a mask should not be worn routinely when dealing with individuals with hiv or aids and only 18 knew that it is not necessary to wear complete protective equipment while dealing with people with hiv or aids only 14 of the students identified the statement that isolation of plwha in a sterile environment is an efficient way to prevent infection complications was incorrect none of the background factors collated in the study correlated with the nursing students knowledge level nursing students general attitudes the mean score for the nursing students general attitude scale was 275 measured on a 5point likert scale the majority of students were afraid of being in contact with a person with hiv or aids and 62 would be concerned about the possibility of contracting hiv about threequarters of the students were worried about their family friends or colleagues after they had come into contact with a person with hiv although almost half of the students thought that dealing with people with hiv would not affect their relationships with others slightly less than 40 of the students reported that they would not want to be assigned to care for plwha as they felt they were not competent to meet their intense physical and psychological needs almost 40 of the students felt that caring for a person who is dying was uncomfortable whilst 75 felt that it was worthwhile to care for a plwha who is dying almost half of the students thought that they had received enough information to deal with people with hiv there were some differences in students attitudes towards particular groups with hiv or aids almost 90 of the students felt more sympathy towards people who had acquired hiv through blood transfusion rather than through the use of iv drugs also 60 of the students felt that they had little sympathy toward drug users with hiv and a similar proportion felt more sympathetic towards those who had acquired the disease through blood transfusion rather than through sexual contact however 17 indicated that they would feel uncomfortable dealing with plwha if the patient was a child 22 if the person was a hemophiliac 35 if the person was bisexual 60 if the person was an iv drug user and 64 if the person was a prostitute 81 of students reported that those who care for plwha should receive additional payment and 66 also stated that caring for plwha should be voluntary the need for isolation required for patients hospitalized with hiv or aids depends on the specific infection present percentages of nursing students attitudes toward the care of plwha a statistically significant association was found between the nursing students overall willingness to provide care for plwha and their general attitude score nursing students homophobia the mean score for the nursing students homophobia was 33 measured on a 5point likert scale a little under half of the students felt uncomfortable dealing with a homosexual with hiv or aids and half felt that they were not worried about dealing with homosexuallyoriented persons about 25 of the students felt that they did not feel comfortable dealing with gay females as they are with heterosexual women the same proportion of the students felt that homosexuality is a lifestyle that should be condemned almost 70 disagreed with the statement that homosexuals with hiv are getting what they deserve 8 of the students thought that the same levels of respect and information should not be given to the partner of a homosexual as would be given to the partner of a heterosexual only 22 of the students felt comfortable being in contact with a homosexual person as they would with a heterosexual almost 30 felt that their attitude toward homosexuals had become more negative since the beginning of the hiv and aids crisis whilst about 40 disagreed about 40 felt that either with or without hiv they would not be happy to deal with gay people although an equal percentage disagreed only the background factor of gender correlated with homophobic level discussion the knowledge level of the russian nursing students was equal to that measured in a lithuanian group of students using the same instrument in large coastal cities in the lithuanian group the mean score was 191 10 whereas in the russian group the mean score was 198 by contrast previous studies using the same instrument have reported the mean scores ranging from 218 to 255 among groups of nursing student in finland 1018 in germany 8 in england 9 and in estonia 10 there was congruence in answers given to statements in the international studies we found a high proportion of incorrect answers in russia finland estonia lithuania germany and great britain in some of the areas of knowledge of the diseases associated with aids only 46 of the russian students knew that opportunistic infections were commonly associated with aids in finland the percentage was 56 and in estonia 40 but in germany the score reached 89 hiv was known to be a common fatal disease in developing countries by 37 of russian students 36 of lithuanian 30 of finnish and 15 of estonian nursing students half of the russian students knew that there is no cure for aids but in lithuania the percentage was 28 in other baltic sea area countries eg in finland and estonia the majority responded correctly about 70 of the russian students knew that hiv cannot be transmitted by casual contact although about 20 responded dont know and 14 possibly we need to emphasize this point because if nursing students think that a person can contract hiv by casual contact for example in nursing care then students could fear contracting hivaids whilst carrying out their daily nursing activities previous studies have shown that 89 of finnish 88 of german about 88 of british and estonian and only 63 of lithuanian nursing students responded correctly to this question another interesting thing was that only 62 of the group of russian students knew that condoms do not give a 100 protection against hiv 8 9 10 18 and this type of general knowledge of hiv and aids is extremely important as such studies such as these serve to highlight basic educational elements that may be overlooked or otherwise presumed russian students were quite well aware of hiv and aidsrelated precautions but there were also knowledge gaps it is very important to know when a patient needs to be isolated for example if nurses are knowledgeable about the correct procedures then hiv and aidsrelated nursing is safe and patients do not need to be unnecessarily isolated however only 65 of the group of russian health care institutions should have the right to refuse to provide care to patients with hiv or aids 15 11 74 providing care for people with hiv or aids should always be voluntary 66 14 20 people with hiv or aids should be cared for in a separate unit with specifically trained personnel 86 2 12 those who care for people with hiv or aids should receive additional pay 81 14 5 students knew that the degree of isolation required for patients depended on the specific infection present the knowledge level was also low among many other groups of european nursing students 8 9 10 18 as have knowledge levels concerning other areas such as hiv and pregnancy 810 knowledge gaps such as these could imply that nursing education does not include enough information about nursing precautions it is therefore essential to teach those aspects which relate to daily nursing activities especially in countries such as russia where the hiv and aids situation is escalating alarmingly in this study the nursing students general attitudes toward plwha were quite negative and many of the students expressed homophobic attitudes the mean score for nursing students general attitudes was 275 this is lower than reported in previous studies using the same instrument in other baltic sea countries where the mean attitude scores have ranged from 281 to 391 91018 the homophobic level in the data was 33 and previous studies have reported levels from 331 to 465 where the 5point scale was worded so that 1 represents the most homophobic attitude and 5 the least homophobic attitude 91018 previous studies have reported that the nursing students attitude level is correlated with their willingness to provide care to plwha 918 and knowledge level this study showed that the group of russian nursing students involved in the study had a moderate knowledge level and quite negative attitudes toward plwha these negative attitudes and lower levels of knowledge may directly influence daily nursing activities with plwha given that the number of plwha in russia is high it is therefore crucial to ensure that nursing education includes sufficient information about this group the study showed that almost 80 of the students felt that they should have the right to refuse to deal with persons with hiv or aids and that about 40 would refuse to care for plwha it should be noted that these questions were asked hypothetically and that agreed ethical standards of practice would guide that all patients be treated in the same way however such general attitudes pose a challenge to nursing education for example mockiene et al 25 found that an education intervention combined with written materials increased nurses knowledge level and positive attitudes therefore incorporating hiv and aidsrelated modules into the nursing curriculum may have a positive effect in this matter plwha have experienced stigma in nursing care and homophobia is one aspect of this 72 of the group of russian final year nursing students knew that not all homosexuals have hiv but it still remains that one in four of russian nursing students and one in five lithuanian nursing students either did not know or thought that all homosexuals have hiv 8 9 10 18 in this study the background factor of gender correlated with the level of homophobia and as in previous studies men were seen to be a little more homophobic than women the study also showed that nursing students attitudes were more negative when the hypothetical plwha would be either intravenous drug users or prostitutes they also felt more sympathy towards people who acquired hiv through blood transfusion rather than through the use of iv drugs earlier studies have also reported similar differences conclusions in russia where the hiv infection level is very high and continuing to grow it is crucial to educate nurses and nursing students about hiv and aids especially when nursing students attitudes are seen to be as negative as presented in this study this is especially poignant as these students were final year nursing students near graduation and to commencing their nursing career nurses are in the front line in the prevention of hiv and in caring for these patients and risk groups thus enhancing nursing students knowledge of hiv and aids and fostering positive attitudes toward patients with hiv could only improve the quality of care for plwha in order to provide evidencebased education and nursing care we should have a more accurate perspective of the knowledge and attitude level of nursing students this study presents a real and valuable step in examining nursing studies in russia and furthermore in a city where hivinfection is highly concentrated it is however not without acknowledged limitations due to advancing technological and pharmaceutical developments the instrument is now somewhat dated so future studies should be carried out with updated instruments eg by including more items related to currently available medication regimes additionally the sample size of this study was quite small and purposive sampling was used so further studies are required in order to be able to generalize the results however this article has highlighted items relating to the knowledge level that graduating nursing students should have when they enter nursing practice and revealed some significant shortcomings nursing students should also be aware of their own attitudes because they have been shown to have an impact on the way they are working however this study may be seen as a starting point in investigating the situation in order to further develop nursing education and care in a country where nursing research is only just emerging as a professional practice competing interests the authors declare that they have no competing interests authors contributions ts ll dl mv and jk participated in the design of the study dl sn participated in data collection ll mp and lli participated in data analysis all authors participated in drafting the manuscript and approved the final manuscript

background the purpose of this study was to describe the knowledge of russian nursing students regarding hiv and acquired immunodeficiency syndrome aids and their attitudes towards caring for peoplepatients living with hiv or aids plwha people living with hivaids and their possible homophobic attitudes the hiv epidemic in russia is substantial and increasing rapidly hence this study provides important new information regarding this phenomenonthe data was collected by questionnaire from students in three nursing schools n 102 response rate 953 the data was analyzed using pasw statistics version 18 for computing the level of the students aids knowledge all correct answers were recorded as equal to 1 while all incorrect and dont know answers were recorded as equal to 0 each respondents scores were totaled and individual scores were analyzed using regression analysis the effect of demographic variables on the average scores of attitudes was also subjected to regression analysis results overall students knowledge level regarding hiv and aids was moderate range 526 of a maximum score of 33 the mean of correct answers was 198 sd 370 nursing students attitudes were quite negative and they also demonstrated homophobic attitudes the mean scale score for nursing students general attitude was 275 and for homophobic attitudes it was 33 min 1 max 5 only the background factor of gender correlated with the homophobic level demonstrated p 05 β 67 nursing students overall willingness to provide care for plwha was associated with their attitudes p 003 β 534 conclusions given that the hiv epidemic in russia is both substantial and increasing it is essential to improve hiv nursing education to provide sufficient and uptodate information about hiv and also to prepare nursing students for caring for plwha in doing so this may help to address both the deficits in student knowledge and also modify their attitude towards plwha

introduction c ontemporary crossnational studies demonstrate that in most countries the majority of young people report a very good health status this is reflected by indicators of general health 1 healthy dietary practices 2 engagement in physical activity 3 and abstinence from substance misuse 4 5 6 yet inequalities in health persist these are especially disadvantageous to adolescents with a lower socioeconomic status 7 socioeconomic gradients in adolescent health have persisted over recent decades 489 among adolescents such inequalities have been identified for selfrated health psychological health academic performance 10 mental health problems 11 life satisfaction 12 overweight and obesity and its behavioural determinant of physical inactivity 1314 there is evidence of an increasing socioeconomic gap in such health indicators during the last decade 89 although the available research base is still scant consideration of these inequalities and their impacts remain a high priority for health policy 15 relatively few studies have focused on international trends in adolescent health inequalities 89 few crossnational studies have investigated the experiences of adolescents who report substantially worse health outcomes relative to others focus on adolescents at risk for poor health is important as such inequalities tend to perpetuate into adulthood 15 while economic arguments suggest that investing in the early childhood years is an efficient strategy to build a productive future workforce 19 similar arguments are seldom heard with respect to adolescence although this remains a crucial developmental period for a healthy transition to adulthood there is also evidence that interventions that are implemented during adolescence can mitigate adverse effects of poor wellbeing during earlier childhood 20 in a large crossnational study that spanned 12 years and involved some 700 000 adolescents from 31 european and north american countries we studied the extent to which their ses relative to their peers in the same country was associated with being in the bottomend of different indicators of health behaviours here we focused on indicators of physical activity and diet physical inactivity and the absence of a balanced diet are key reasons for increases in childhood obesity 2122 and other indicators of shortterm and chronic morbidity 23 24 25 26 27 28 29 30 our primary objective was to estimate the magnitude of the association between family ses and poor adolescent physical activity and dietary behaviours across 34 countries moreover if there was evidence of such an association we aimed to determine whether the magnitude of this socioeconomic gradient changed over time in the different countries this foundational information would inform social policies and health promotion strategies internationally methods health behaviour in schoolaged children is a crosssectional schoolbased study that has been conducted every 4 year since 1982 hbsc aims to increase the understanding of adolescent health and wellbeing as well as the health behaviours and social environments that contribute to such outcomes 5 data are collected from 11to 15yearold school children according to a common international protocol each member country obtained ethics clearance to conduct the survey from a universitybased review board or equivalent body a detailed description of the aims and theoretical framework of the hbsc study can be found elsewhere 4 the current analysis used data from the last four hbsc cycles in socioeconomic status the family affluence scale is a measure of material family wealth developed as an indicator of absolute level of ses 2324 between 20012002 and 20092010 the hbsc fas scale was comprised of reports for the following items ownership of a family car own bedroom family holidays during the past 12 months and family computer these items are combined to produce a composite score ranging from 0 to 9 in 20132014 two more items were introduced to this scale numbers of bathrooms and ownership of a dishwasher 24 as per precedent 31 cyclespecific measures of fas were transformed into a continuous proportional rank score ranging from 0 to 1 separately by country with the country sample means set at 05 these countryspecific ridit scores reflect the proportion of respondents with lower family affluence with higher values reflecting higher levels of ses relative to others within the country in regression models of health one unit on the ridit scale refers to the difference between the least affluent and most affluent adolescents in the country 8 physical activity moderatetovigorous physical activity was measured by asking on how many days over the past seven participants were physically active for at least 60 min the survey item defined mvpa as any activity that increases your heart rate and makes you get out of breath some of the time and includes examples such as running and brisk walking 24 response options ranged from 0 days to 7 days the item has been used in the hbsc since 20012002 and correlates highly with a general question about physical activities 3 the measure reflects current policy recommendations for childrens physical activity 25 healthy diet following precedent 26 two items on fruit and vegetable consumption from an abbreviated food frequency questionnaire were combined into a healthy eating index each item was first recoded from an ordinal to a ratio scale as follows never 0 less than once a week 025 once a week 1 24 days a week 3 56 days a week 55 and once a day every day and more than once a day every day 7 the two items were then added together so that the index ranged from 0 to 14 with 0 corresponding to never eating fruit or vegetables and 14 to eating both fruit and vegetables at least once a day unhealthy diet items on sweets and sugaradded soft drinks consumption similarly contributed to an unhealthy eating index items were first reversecoded as follows and then summed together never 7 less than once a week 55 once a week 3 24 timesweek 1 56 days a week 025 and once a day every day and more than once a day every day 0 in the composite 014 scale 0 denotes consuming both sweets and sugared drinks at least once a day and 14 refers to never consuming sweets or sugary drinks indicators of bottomend health to identify adolescents who have substantially poorer health behaviours relative to their peers we estimated the mean in the lower half of the distribution for each indicator separately by country and year adolescents who fell below this threshold reported worse outcomes than an average respondent among the least well performing half of their population this method has been applied in past hbsc 16 unicef 1718 and other international reports 27 the present study focuses on the individual determinants of scoring in the bottomend group rather than on the countrylevel dispersion of health scores in the lower half of the distribution see 27 analysis our analysis focused on the strength of associations between the countryspecific ridittransformed fas score and bottomend health outcomes we used linear probability models separately for each indicator country and survey year such models are computationally straightforward and easy to interpret in terms of differences in probabilities of the outcome but since they can produce biased estimates 28 we also replicated all analyses using logistic regression the findings were qualitatively identical all models controlled for age and gender and were fitted separately by country using sample weights standard errors were adjusted to reflect the complex sampling structure of the surveys with schools identified as primary sampling units and regions as strata we report on the effects of a oneunit difference in the ridit score for family affluence on the probability of being in the bottomend group for each indicator controlling for age and gender to investigate whether the effects of family affluence have changed significantly over the last four survey cycles we included a trend variable with interaction terms between this trend variable and each of the three other predictors results there was substantial crossnational variation in the size of the bottomend group of adolescents to define the bottomend group the share of adolescents that fell behind on mvpa ranged from 10 in portugal to 27 in belgium while the proportion of those that fell behind on healthy eating varied from 16 in belgium and switzerland to 26 in hungary and spain while one in four adolescents scored poorly on unhealthy eating in the combined sample this varied from 12 in sweden to 33 in norway table 1 shows large and widespread socioeconomic inequalities in physical activity and healthy eating with mixed results for unhealthy eating in all 31 countries in the 20132014 analysis adolescents from more affluent households were significantly notes percentage point difference between the most and the least affluent adolescents standard errors adjusted for clustering at the school level and stratification by region statistically significant effects in bold less likely to fall behind in mvpa with the fas gradient ranging from à83 in finland to à219 in luxembourg thus the probability of scoring in the bottomend group in mvpa is 219 points lower for adolescents from the most affluent families in luxembourg than for their peers from the least affluent families similarly adolescents in the lowest ses strata were more likely to fall further behind in healthy eating in all countries except malta and romania where there were no statistically significant differences identified the united kingdom showed the largest negative gradient in healthy eating the poorest adolescents were 213 points more likely to fall furthest behind hungary posted the largest negative gradient in unhealthy eating adolescents from the most affluent families were 161 points less likely to consume excess sugar in contrast the most affluent adolescents in estonia were 71 points more likely to engage in unhealthy eating in the vast majority of the countries studied the sizeable and statistically significant socioeconomic gradient in mvpa remained stable over time in six countries it became significantly larger in absolute terms between 20012002 and 20132014 belgium italy latvia the netherlands sweden and the united kingdom the fas gradient in healthy eating remained stable over time in most of the countries studied in canada and the united kingdom this gradient increased suggesting that adolescents from lower socioeconomic backgrounds were increasingly less likely to consume fruit and vegetables when compared with their peers in three other countrieslatvia lithuania and romaniathe fas gradient has decreased although in latvia and lithuania adolescents from loweraffluence families were still significantly less likely to eat healthily in romania socioeconomic inequalities were no longer statistically significant in 20132014 conversely in the majority of the countries analysed there were no statistically significant socioeconomic inequalities in unhealthy eating in 20132014 in eight countries adolescents from more affluent households were less likely to report frequent consumption of sweets and sugary drinks while in three others they were more likely to do so while in many countries there was not a significant fas gradient in unhealthy eating between 20012002 and 20132014 higher consumption of sugar in less affluent households persisted over time in france ireland and the united kingdom the fas gradient in unhealthy eating changed significantly between 20012002 and 20132014 in eight countries in six of theseestonia latvia lithuania poland portugal and romaniaadolescents from more affluent backgrounds were more likely to report a higher frequency of unhealthy eating than their peers in 20012002 but these differences either narrowed or disappeared by 20132014 in the remaining two countries belgium and hungary adolescents from less affluent backgrounds were increasingly more likely to report a higher frequency of unhealthy eating discussion adolescence is a critical period of transition in the life course characterized by biological psychological and relational changes such transitions are of fundamental importance to health 15 and set the stage for future patterns of adult inequalities 29 in the vast majority of studied countries between 20112012 and 20132014 adolescents from relatively low ses families had a greater likelihood of falling furthest behind in health particularly with respect to reported physical activity and healthy eating for unhealthy eating another pattern emerged with no indication of an association with ses for the majority of the countries and mixed results for the rest sweets and soft drink consumption may be associated with knowledge about healthy diets which is typically higher in more affluent socioeconomic groups 30 indeed in eight countries young people from low socioeconomic groups were overrepresented in the bottomend of unhealthy eating in 20132014 in four of these the pattern has persisted since 20012002 meanwhile in another six countries adolescents from more affluent backgrounds were more likely to report a higher frequency of unhealthy eating than their peers in 20012002 although the association decreased or disappeared by 20132014 this is consistent with historical studies that documented a positive association between family affluence and frequent soft drink consumption among adolescents in central and eastern europe at the turn of the century possibly as an indicator of the ability to afford such luxuries and hence relative wealth 32 inequalities in adolescent health were widening in some of the countries studied socioeconomic inequalities in mvpa increased in six countries during the 12year study period in canada and the united kingdom the association between ses and adolescent healthy eating became more pronounced over time as did unhealthy eating in belgium and hungary widening national income inequalities tend to increase socioeconomic differences in health perpetuating the socioeconomic divide 8 conversely in some countries inequalities in adolescent health decreased considerably between 20012002 and 20132014 adolescents in latvia and lithuania from less affluent families were less likely to eat healthily but this association weakened significantly between 20012002 and 2013 2014 for romania socioeconomic inequalities in healthy eating disappeared in the same period these results suggest that social gradients in health can evolve over time this study has several potential limitations first the crosssectional design of the hbsc study precludes the establishment of the temporal sequence of events limiting claims on causality it is unlikely however that the outcomes of physical activity and diet would precede of ses second the indicators of adolescent health used here although standardized and validated for crossnational comparison 2633 come with their own inherent limitations the indicators of fruit vegetables sweets and sugary drink consumption are all based on frequency of intake rather than amounts consumed 2 thus we do not know whether eg adolescents who reported daily consumption of fruit and vegetables actually consumed five portions of fruit and vegetables a day but our measures are the best proxies for healthy and unhealthy eating afforded by our data our measure of ses relies on an assumption that the scores of the fas scale can be used to rank individuals and groups along a latent continuum of material wealth 31 although fas has been validated against other measures of family ses such as parental occupation 23 the scale is subject to measurement error and it is very challenging to assess this construct by selfreport in populations as young as 11 years finally not all countries were present in each of the four survey cycles limiting the crosscountry comparability of the results in conclusion this study establishes that socioeconomic inequalities in adolescent physical activity and dietary behaviours are large and stable across countries and over time these are important findings because they suggest two common mechanismsphysical activity and dietby which health inequalities emerge and adolescents become socially disadvantaged within and across different cultures and societies the results indicate a fundamental unfairness 16 17 18 that affects the most socioeconomically disadvantaged adolescents in almost all societies an unfairness that is consistent and persistent and sets the stage for negative health trajectories these findings point to a universal need for public health interventions focused on physical activity and diet including social policies that specifically target these and other aspects of health in our most disadvantaged children as priorities nationally and internationally conflicts of interest none declared key points few crossnational studies have investigated the experiences of adolescents who report substantially worse health outcomes relative to others this study reveals large widespread and persistent socioeconomic inequalities in the risks of the poorest adolescent health behaviours with respect to reported physical activity and healthy eating both across 34 industrialized countries and over time inequalities in unhealthy eating are less prevalent and may change their direction over time

37 cristofar sp basiotis pp dietary intakes and selected characteristics of women ages 1950 years and their children ages 15 years by reported perception of food sufficiency

a introduction the decline of islam in various fields cannot be denied and it is influenced by factors such as the hegemony of western civilization and muslims tendency to embrace fatalism 1 this stagnant mindset keeps muslims bound by western influence emphasizing the urgent need to address the current social crisis in islamic theology human 2 freedom is crucial it highlights that individuals possess the will to take action and are not meant to surrender to circumstances this theological discussion has given rise to two streams of thought within islam the qadariyah school argues for human freedom and the power to shape ones life while the jabariyah school maintains that humans lack space to determine their will and actions therefore islam answers the social crisis by affirming that muslims have the freedom and power to shape their own lives 3 it is important to note that human freedom does not imply unlimited freedom this study limits the meaning of freedom to present an objective perspective 4 as explored in this research human freedom refers to the undetermined nature of choices to analyze the impact of hurriyah alinsan in combating fatalism an islamic theological study approach will be employed in the muslim community of bandar setia village a mixed methods approach will ensure comprehensive and objective research results combining quantitative and qualitative data by adopting this approach the author aims to provide valuable insights that encourage society not to succumb to fatalism this study is focused on the community of bandar setia village 5 b bandar faith village the name bandar setia existed before indonesias independence in 1901 to be precise formerly the village of bandar setia was called the village of bandar setia because of the division around the 70s then the name was used as the villages name and since the existence of the name of bandar setia village the village heads who were elected during that long period only had three figures who served among the three figures one of them served as the head of bandar setia village for approximately 32 years namely mr anwar hamid after that he was replaced by mr jalaluddin for 12 years and the last one was mr sugiato who was in office for one year until now6 until the time this research took place the condition of bandar setia village in the past differed from today bandar setia village and other villages in kec percut sei tuan used to be so bandar setia village has a long history dating back to 1901 before indonesias independence it was initially named bandar setia but underwent a division in the 1970s resulting in using the name as the villages official name over the years there have been only three elected village heads in bandar setia mr anwar hamid served for approximately 32 years followed by mr jalaluddin for 12 years and mr sugiato who has been in office for one year at this research the villages conditions in the past differed from todays bandar setia village along with other towns in kec percut sei tuan used to be quiet with a small population the inadequate road access and large trees and shrubs created a somewhat intimidating atmosphere kampung kolam now known as the village of pool was once a base for the indonesian communist party in 1965 7 the pkis cruel reputation caused the surrounding villages to be feared and avoided however its essential to note that this negative stigma reflects the past and does not represent the present situation in percut sei tuan after the 1980s bandar setia village started to attract people as a desirable place to live this was primarily due to improved community facilities making it a densely populated settlement 8 the negative image previously associated with tembung and the surrounding areas began to fade additionally bandar setia village gained recognition as kampung qurani because of the establishment of the bandar setia qurani village center approximately six years ago as the population grew and competition for livelihood increased unemployment and fatalistic attitudes became more prevalent poverty levels also rose in bandar setia village 9 therefore a solution is needed to address these challenges and the concept of human freedom 10 represented by the qadariyah and mutazilah schools provides a potential approach the adherents of the jabariyah ideology as well as the asyariyah also play a role in influencing the social life of the community whether positively or negatively however the author believes that applying the concept of human freedom is crucial to avoid fatalism and the negative impact of a stagnant lifestyle to prepare society to compete in the global market a professional and appealing presentation of the understanding of human freedom is necessary this concept can become a soughtafter choice among consumers by offering highquality products and services our collective responsibility is to market and promote it effectively addressing various aspects of life and providing comprehensive solutions to the current challenges bandar setia village should become a vibrant community where people actively participate therefore community innovation and development should be encouraged to prevent apathy and to surrender to fate 8 syafruddin ritonga perkembangan desa bandar setia kecamatan percut sei tuan kabupaten deli serdang jurnal ilmu pemerintahan dan sosial politik uma 9 latifah hanum zainuddin nasution implementasi programkeluarga harapan dalam perantara kemiskinan di desa bandar setia kecamatan percut sei tuan kabupaten deli serdang taushiah fai uisu vol 12 10 rovi husnaini kebebasan dan keterikatan berfikir manusia perspektif theologi modern jurnal rasi vol 1 no 2 pp 17284 c the concept of hurriyah alinsan and its implications for the social development of society a the concept of hurriyah alinsan god is the creator of the universe including man himself he is almighty and has an absolute will here the question arises to what extent man as gods creation depends on gods final will and power in determining his lifes journey is a man bound entirely to gods absolute will and energy in managing his life 11 in responding to questions like these this freedom and attachment can and in historical reality have given rise to two extreme schools of thought about human action about gods action jabariyahs understanding argues that humans cannot determine steps because allah has chosen their activities since the azali and made them happen to on their own merits 12 in this understanding humans cannot choose all movements and actions humans carry are essentially from allah god as the creator of the universe and humankind possesses absolute power and will this raises the question of the extent to which humans as gods creation depend on his will and energy to determine their lifes journey and manage their actions in response to this question two extreme schools of thought have emerged throughout history regarding the relationship between human activities and gods actions 13 the jabariyah school of thought argues that humans cannot determine their actions 14 they believe that allah has predetermined human actions for eternity and that humans play no role in realizing their actions 15 in this view humans are like puppets controlled by a puppeteer utterly devoid of free will adherents of this ideology deny the existence of human will in carrying out actions on the other hand the qadariyah school holds the opposite opinion they believe that humans possess freedom and power in determining the course of their lives according to this perspective humans can choose and execute their actions which god does not predetermine this understanding is often referred to as free will and a complimentary act in this view god does not predetermine human actions and humans are responsible for their actions 16 both the qadariyah and jabariyah arguments can be found from a quranic perspective the quran contains verses that can be interpreted in support of both ideologies it is important to note that the arguments for these two schools of thought developed over time in response to ongoing actions and debates the division between the qadariyah and jabariyah 17 groups significantly influences discussions on the relationship between gods actions and human actions the qadariyah argue that humans are the creators of their efforts at the same time the jabariyah maintain that allah is the creator of all human activities 18 rendering humans as compelled beings without will 19 in subsequent periods various theological schools of thought emerged including the mutazilah and the asyariyah explicitly addressing the issue of human actions the mutazilah aligns with the qadariyah ideology while the asyariyah lean more towards the jabariyah ideology although not exclusively both sects seek to gain favor from god the mutazilah are concerned that an absolute will and power of god would violate the concept of justice while the asyariyah also expresses their concerns 20 according to the mutazilah human actions are not created by allah they view actions as solely related to humans and discourage connecting them to divine influence they argue that an action cannot be performed by two actors simultaneously 21 on the other hand the asyariyah believe that god creates human activities but acknowledge that humans have a part in manifesting these actions even though that part is not practical a concept known as kab 22 in line with that duncan b mcdonald also commented the mutazilites following their principle of justice gave the man an initiative power alasyari struck a middle path a man cant create anything god islam is the only creator nor does mans power produce any effect on his action god created in his creator power and choice is comprehensive and has links with other ideas25 however this paper only explains what it is as an initial framework for developing our thinking discourse we can position the concept of hurriyah alinsan proportionally as i have stated human freedom should not be interpreted as being free without limits but rather oriented towards god not predetermining human actions we must socialize this understanding from this orientation to create a dynamic creative and innovative society b the implications for the development of social life in the village of bandar setia in discussing the influence of the understanding of human freedom it is essential to consider both positive and negative dimensions the positive impact of this understanding lies in its ability to foster an optimistic and dynamic attitude toward the future it encourages individuals to adapt to changing environmental conditions and strive for progress this mindset instills hope and motivates people to take action as they recognize that life is not defined by permanent conditions such as poverty or ignorance instead they understand that life is a cycle with ups and downs and that they have the agency to shape their destiny additionally this understanding allows individuals to perceive the justice of god it assures them that god is not unjust and that he has provided them with the freedom to choose their path through the guidance of the quran they are empowered to make decisions and take responsibility for their actions knowing their efforts will not be in vain moreover this understanding can motivate positive change within a nation in recognizing the moral deficiencies present in various sectors of society such as the bureaucracy clergy and ordinary citizens individuals are inspired to actively work toward improving the fate of their nation 26 it encourages them to reject complacency and strive for the betterment of their country and religion embracing the spirit of freedom to shape their collective destiny however this understanding can have negative consequences when taken to an extreme excessive belief in ones ability to control and manage their life may lead to arrogance and a sense of omnipotence 27 this can result in the neglect of spirituality and an overreliance on reason with individuals perceiving themselves as allpowerful beings in such extreme cases the concept of god may be disregarded and the worship of human intellect and rationality may take precedence on the other hand the jabariyah understanding which emphasizes surrendering everything to allah and recognizing his power can have positive and negative impacts on the positive side it cultivates humility and a deep reliance on gods omnipotence it reminds individuals of their dependence on allah and encourages them to approach life with humility and gratitude however an extreme interpretation of this understanding can lead to a loss of human responsibility for their actions if god has already determined everything since eternity individuals may question the need to take responsibility for their choices and actions this fatalistic attitude can result in a lack of initiative and a diminished sense of personal accountability moreover this understanding can contribute to a stagnant society that does not actively pursue progress by surrendering to fate individuals may become complacent and fail to harness the nations resources and potential although this understanding can encourage intellectual development allowing minds to explore freely within the boundaries of scientific principles there are various other impacts to be considered overall understanding human freedom has positive and negative dimensions highlighting the need for a balanced approach 28 it is important to recognize individuals agency in shaping their lives while acknowledging the power and guidance of a higher authority striking this balance can lead to a more holistic and constructive view of human actions and their relationship with the divine in the bandar setia village community there is a difference in understanding the concept of hurriyah alinsan 29 based on education levels people with low education may need to be more familiar with this concept at the same time those educated particularly those studying or teaching at islamic universities like uin north sumatra medan have a better understanding of it however the actual practices within the community reflect these notions individuals with a low work ethic often attribute their circumstances to fate believing they will remain poor no matter how hard they work this mindset fosters laziness and hinders progress and development in the village it also contributes to various irregularities such as drug abuse and alcoholism 30 a local religious leader ustadz suhendri emphasizes that bandar setia village has excellent potential but laments the slow development due to a static mentality he suggests building mental strength as diligent and tenacious workers fostering a visionary spirit and encouraging creative and innovative thinking he 28 analisa dampak positif dan negatif dari faham qodariyah dan jabariyah ini dapat dilihat dalam machasin menyelami kebebesan manusia h 125130 29 achmad charris zubair kebebasan manusia menurut konsep islam jurnal filsafat 30 interview with mr jalaluddin sh mh on friday 11 february 2022 at 1400 wib highlights the importance of understanding the hurriyah alinsan concept to cultivate enthusiasm and energy 31 based on this analysis the risks of fatalism outweigh the benefits of human freedom therefore there is a need to promote the understanding of human freedom within the community however reframing and reformulating the concept to minimize vanity elements is crucial making it more accessible and appealing in bandar setia village many residents are unfamiliar with this concept but it should be conveyed to prevent the proliferation of fatalistic ideologies that hinder progress the understanding of human freedom hurriyah alinsan aligns with the qadariyah school of thought and emphasizes unlimited freedom not predetermined by god bandar setia village needs to aspire to become a progressive and prosperous community this requires improving the mentality of the people fostering a strong work ethic and nurturing high spiritual enthusiasm embracing this understanding of human freedom can have numerous positive impacts including cultivating a dynamic attitude of optimism fostering creativity and innovation maintaining awareness of gods presence driving reform and contributing to developing a prosperous nation the challenge lies in effectively communicating this concept to the public professionally and proportionally ensuring its acceptance and avoiding conflicting statements d conclusion the concept of human freedom hurriyah alinsan is associated with the qadariyah understanding and has recently been adopted by the mutazilah school it entails unlimited freedom but it is important to note that this freedom is undetermined meaning that it is not predetermined by god allah did not predestine individuals to be fooled or poor instead we have the agency to shape our lives through our efforts we are responsible for the choices we make and the outcomes we achieve therefore for bandar setia village to become advanced and prosperous the mentality of its people must be improved emphasizing a solid work ethic and high spiritual enthusiasm this understanding of human freedom has numerous positive impacts it fosters a dynamic attitude of optimism encouraging creativity innovation and an awareness of gods presence it also facilitates progress and reform contributing to developing a nation that thrives and prospers the goal is to effectively package and communicate this concept professionally and proportionately ensuring it is wellreceived by the public the key to success lies in societys acceptance of this concept while ensuring that those responsible for its dissemination maintain a consistent and coherent message

this article seeks to discuss the crisis faced by the islamic community and its inclination towards fatalism various factors such as western hegemony and a conservative mindset among certain muslims have contributed to the decline of islam the concept of unrestricted freedom known as free will is being advocated as a solution the researcher employed a mixed method approach combining quantitative and qualitative data to obtain a comprehensive understanding of the subject the research findings demonstrate a positive aspect wherein individuals possess a dynamic and optimistic outlook towards the future humans are expected to adapt to the evolving environment which necessitates change to prevent fatalism the concept of human freedom referred to as hurriyah alinsan is proposed as a viable option for the muslim community

introduction since 2019 the employees provident fund malaysia has raised the fundamental savings quantum to myr240000 nearly doi 455 2018 slavik wiseman 2018 there are also few empirical studies of bequest motives in malaysia particularly among malaysian chinese compared to italy japan germany and the us following the same line older chinese malaysians make up the second largest ethnic group in malaysia with 228 230 and 232 we believe it is worthwhile to study their wealth distribution income flow and saving behaviour for the next generation thus this study seeks to determine whether urban malaysian chinese bequest motives are a selfish life cycle altruism or social norms and traditions malaysian chinese households have had the highest monthly income since independence peninsular malaysias secondlargest ethnicity is urban financial knowledge satisfaction and bequest motives in this older group could be studied introductions should state the problem previous work purpose and contribution literature review risk tolerance or widely studied as financial risk tolerance in many recent economic and investmentrelated studies is generally referred to as the risk an individual is willing to take when making decisions related to social or financial in general financial risk tolerance has measured the respondents risk tolerance regarding their reluctance or willingness to take risks when making decisions whether they are risktaker or riskaverse gender and age in this study gender and age will be included as demographic variables to study the influence on risk tolerance over decades it has been stereotyped that females are more riskaverse than males based on a study by thanki and baser it was found that males were more risktakers than females at least among the indians it could be due to social norms as males have betteroff education financial knowledge and financial ability to invest than women besides due to 457 knowledge plays a role in influencing financial risk tolerance to build their selfconfidence they must spend more time and energy improving their financial knowledge through the workshop training and courses to minimize their investment risk while at the same time financial knowledge has an impact on malaysias economic growth h3 financial knowledge will have an effect on risk tolerance financial satisfaction in the past few years several studies on the influence of financial satisfaction on risk tolerance were conducted in these studies financial satisfaction is usually measured by how well they are satisfied with their current financial situation furthermore studies by aboagye and jung and jeong and hanna found that risk tolerance has a significant positive relationship with financial satisfaction among american investors and south korean homemakers in their respective studies this case explains that people with riskier assets or high financial risk tolerance feel more satisfied with their financial situation it is also possible that people who are happy with their financial situation would be more willing to invest in riskier assets for higher returns besides some studies also discovered that highincome or financially welloff people might look for lowrisk investment products since they already have enough financial resources to back up their retirement life and leave some bequests to their family members especially their children they may feel there is no point in highrisk investment portfolios a study done in south africa found that life satisfaction significantly affects risk tolerance this is due to some lowerincome and wealthy investors keen to tolerate higher risk when they decide on certain investment products which can increase their wealth nonetheless zhu found that financial satisfaction does not significantly correlate with financial risk tolerance among hong kong students h4 financial satisfaction will have an effect on risk tolerance 458 bequest motives bequest motives were included in this study to fill a literature gap between risk tolerance and bequest motives according to faff mulino and chai risk tolerance and aversion are strongly related these variables are primarily consistent with highrisk tolerance and lowrisk aversion individuals according to a study by bommier and grand the demand for annuity insurance will decrease if individuals risk aversion is sufficiently high and they intend to bequest in this case it shows individuals who prefer to avoid risk would save more money in the future and legacy to their children for lifetime care the findings are consistent with lockwood individuals with bequest motives that see the potential to leave wealth to heirs and are riskaverse will increase their savings and avoid buying annuity insurance bequest motives are generally discussed using three different typologies selfish lifecycle altruism and social norms and traditions each typologies assumes individuals act differently when making bequest decisions for their children social norms and traditions social norms and traditions believe individuals to be influenced by the culture norms or family traditions in their bequest planning for example in japan confucian teachings strongly influence their practice thus the eldest son is expected to live with their parents who will bequest to their eldest son according to horioka the supposedly strong influence of confucian teachings should skew the japanese toward altruistic bequest motives however it appears that the japanese seem less altruistic and have consistent results in selfish lifecycle bequest motives h5 social norms and tradition will have an effect on risk tolerance selfish lifecycle model the selfish lifecycle bequest motives model assumes individuals are selfish and concerned about their welfare in this model the individuals will not conduct any intergenerational transfer or bequest to their children unless their beneficiary could achieve the given demands such as children providing attention and care to their ageing parents if they seek to be 459 included in their wills suppose the children fail to provide any attention and care in that case the individuals or parents will consume the savings to enjoy entertainment and may or may not leave the leftovers to their beneficiaries in certain theoretical reviews the selfish lifecycle bequest motive is known as strategic bequest motive or exchange bequest motive having the same definition where the parents are assumed not to be concerned about their childrens current or future socioeconomic status and seek to threaten or influence their childrens behaviour using inheritance in recent years researchers have found that parents in china and japan have consistent results in terms of bequest motives and were more likely to be selfish as these parents will bequeath to children who provide instrumental support such as care and attention during old age h6 selfish lifecycle will have an effect on risk tolerance altruism model in altruism bequest motives the model assumes individuals to be loving and selfless thus the parents will leave a bequest to their children regardless of whether their children fail to provide care or attention during their old age altruistic parents will care for their childrens socioeconomic status and welfare and bequest more for children with lower socioeconomic status than the rest of the siblings due to the assumption that parents are loving and will leave more to their children with lesser capability the division of assets is unlikely to be equally divided among the siblings in order to leave more bequests to the next generation altruistic people may look for highrisk investments for higher returns h7 altruism will have an effect on risk tolerance methodology the target sample was those malaysian chinese aged 50 or older and residing in selangor malaysia an age of 50 years and above is referring to an elderly person based on the world aging report published by the united nations and in the malaysia perspective the age of elderly is aged between 65 years old and above while in the context of this study we have chosen the sample at the age of 50 and above in order to explore their financial behavior it is applied purposive sampling which is a nonprobability sampling method the data were collected through facetoface interviews the survey covered a sample of 263 completed cases in this study the older malaysian chinese financial risk tolerance is the dependent variable the low scoring of risk tolerance of older adults suggests the tendency to be riskaverse while the high scoring indicates the tendency to be a risktaker besides there are seven independent variables which are sex age and flowed by older adults financial knowledge financial satisfaction selfish lifecycle model altruism model and social norms and tradition the details of the descriptive analysis of the respondents characteristics are shown in table 1 findings throughout the principal component analysis plus the varimax rotation function table 2 shows the kaisermeyerolkin value is above 0700 exceeding the acceptable value of 0600 and confirmed that the sampling adequacy for each factor toward the complete model besides the pca indicated four factors and their eigenvalue of one and above in total the percentage of total variance explained up to 798 table 3 shows that the average score of the total ranks for risk tolerance was 28492 with a standard deviation of 13380 it indicated that older malaysian chinese agreed they are riskaverse and uncomfortable putting their money in bonds mutual funds and stock markets compared to a bank account the risk tolerance variable consists of three statements with cronbachs alpha and composite reliability scores of more than 0700 which means the reliability is acceptable besides the average variance extracted is more than 0500 and indicates no validity matter in addition the average score of the total ranks for social norms and tradition was 33169 with a standard deviation of 14713 which means that most older malaysian chinese perceived that adult children should not provide financial assistance to their older parents the social norms and tradition variable consists of three statements with cronbachs alpha and composite reliability scores of more than 0700 indicating no reliability matters the average variance extracted is more than 0500 which means the validity is acceptable the average score of the total ranks for the selfish lifecycle was 47452 with a standard deviation of 11623 it indicated that older malaysian chinese agreed that they are greedy and expect something from their children if they leave their assets to their children the selfish lifecycle variable consists of three statements with cronbachs alpha and composite reliability scores of more than 0700 indicating no reliability matters moreover the average variance extracted is more than 0500 and shows no validity moreover the average score of the total ranks for altruism was 40051 with a standard deviation of 12540 it indicated that slightly more than half of older chinese respondents perceived that older parents should provide financial assistance to their children if they are financially independent the altruism variable consists of three statements with cronbachs alpha and composite reliability scores of more than 0700 indicating no reliability matters besides the average variance extracted is more than 0500 and shows no validity the diagnostic tests were conducted to ensure the multiple regression assumptions were met multiple regressions were administered to ascertain whether the seven independent variables were statistically significant the regression analysis shows the f test 21460 with a pvalue less than 1 level besides the model as a whole explained more than 350 of the variance of older malaysian chinese financial risk tolerance this study revealed that male age financial knowledge financial satisfaction and altruism are associated with older malaysian chinese financial risk tolerance meanwhile the hypotheses h5 and h6 were not supported at 1 level toward risk tolerance generally the male respondents have higher financial risk tolerance scores than older females it means that older males are more willing to place their money into bonds mutual funds and stock markets than put it in a bank account as a result hypothesis h1 is supported at 1 level in other words the older males may consider risktakers and riskaverse to the older females these research findings align with christina rajesh thanki and baser and zandri and sune studies about south african investors risk tolerance from a cultural and traditional point of view asian males always are the head of the household and have more financial stress than females to ensure his family has a better lifestyle he always looks for higher risk and higher return portfolios to be invested in in conclusion financial courses and lifelong learning could be a way to educate older adults to minimize their financial investment risk this study also encountered that when people get older they are less confident in investing their money into a higherrisk financial portfolio such as bonds mutual funds and stock markets in conclusion hypothesis h2 is supported at 1 level and means youngestold respondents are willing to take higher risks than middleold and oldestold malaysian chinese it is also supported by dickason and ferreira hendrawaty irawati and sadalia and zandri and sune studies in summary the retirement funds body and company have to take it seriously to ensure malaysians have enough savings for their consumption during the retirement period older adults ie the oldestold and middleold malaysian chinese compared to the youngestold malaysian chinese must abandon highreturn and risky portfolios in favour of safer and lowerreturn portfolios due to their age and health status older adults with better off financial knowledge are more skewed toward higher financial risk tolerance and more likely to invest in bonds mutual funds stock markets or highrisk portfolios it could be due to their education level and selfconfidence to build up 465 their selfconfidence they have to spend a lot of time and expenses attending financial courses to understand the current trend and situation in order to maximize their investment returns with lower risk than normal investors as a result hypothesis h3 is supported at 1 level and this statement is also in line with bayar et al and reddy and mahapatras studies in conclusion the relevant agencies such as the ministry of finance ministry of education malaysian qualifications agency and other authorities must ensure the training agencies provide the proper and significant training to the public besides the older adults with higher financial satisfaction are less likely to have higher financial risk tolerance investments than another group the lower financial satisfaction group those financially welloff older people are comfortable with their current financial situation and less motivated to look for higherreturn investments in conclusion hypothesis h4 is supported at 1 level and means financially welloff older adults are less likely to take financial risks than other groups of older chinese it is also supported by payne kalenkoski and browning even the principal component analysis found three bequest models among older chinese in selangor malaysia however the multivariate analysis shows that only altruistic older respondents positively associate financial risk tolerance which hypothesis h7 is supported at 1 level the selfishness and social norms of older chinese are not significant toward financial risk tolerance in other words hypotheses h5 and h6 are not supported at 1 level in summary altruistic older adults are more willing to take a higher risk than others to accumulate more legacy for the next generation and ensure their children are free from financial stress or independence in other words they instead take more elevated investment risks and work hard to exchange for their childrens future wellbeing conclusion limitations and implications the result of multiple regression found that a male age financial knowledge financial satisfaction and altruism are statistically significant at 1 toward the financial risk tolerance of the older malaysian chinese in terms of coefficient older malaysian chinese who are male have financial knowledge and are altruistic toward their children were found to positively affect their financial risk tolerance leading to high risk in investment older male adults are willing to accept higher risk as they seek higher returns due to their status in the household as the head of the family and primary earner meanwhile older adults with financial knowledge can tolerate higher risk simply due to their confidence and ability to identify their portfolios and make rational decisions altruistic older adults can take higher risks which may be due to the nature of altruism altruistic adults will save and help their children unconditionally by ensuring they are free from financial issues and achieve satisfiable socioeconomic status result also shows that increase in age will decrease the risk tolerance of adults according to the law of malaysia this may be due to the retirement age of malaysians being sixty years old and retirees unable to tolerate higher risk with their limited savings and continue to dissave apart from this financially satisfied older adults have lower risk tolerance as they do not actively seek to accumulate earnings through investment since they are satisfied with their current financial situation this study provides important implications further to strengthen individual financial knowledge through malaysias national strategy to empower the right knowledge and skills to confidently make the financial decision at every life stage and age to better cope with greater literacy and capability in maintaining wealth in current and future generations in the same direction financial problem is cited as one of the main contributors to bad wellbeing whereby an individual must be empowered by knowledge specifically financial knowledge to ensure one plan their finances early in life thus it indicates that older male adults are alleviating their need to save for precautionary purposes with the presence of financial knowledge the level of satisfaction with their wealth and individual altruistic behaviour toward the level of risk the limitation of this study is that the survey was conducted to collect samples before implementing the movement control order to curb the rise in covid19 cases which has a significant effect on the economy businesses shutting down wageearner losing their jobs the covid19 pandemic may alter their behaviour or perception toward financial risk tolerance according to heo rabbani and grable the covid19 pandemic shifts financial investors risk preferences from risktaker to riskaverse future studies should be able to use the results from this study to identify the effect of the covid19 pandemic on the financial risk tolerance of the older malaysian chinese furthermore due to covid19 and mco implementation in malaysia many households have withdrawn their retirement savings such as the employees provisional funds before their retirement age to remain sustainable such actions may seem viable in the short run however in the long run these households may suffer during their retirement period due to lower accumulation in savings as a result these households may be willing to accept higher risk to earn the loss in retirement funds by investing in other areas such as the stock market however any mistake made in their investment may lead these households to deepen their wounds

older malaysian chinese has one of the highest mean incomes among the other ethnicity in malaysia as these individuals grow older their savings and retirement fund will dwindle and are insufficient for their spending as a result these individuals will seek to earn extra income from investment so that they could save more for their children and lifetime care however investment is subject to risk thus this study examines the effect of gender age financial satisfaction financial knowledge and bequest motives on older malaysian chinese financial risk tolerance in this study the target sample was those chinese aged 50 or older residing in selangor malaysia the data were collected through facetoface interviews with the purposive sampling method as a result the survey covered a sample of 263 completed cases the multiple regression analysis shows that males with optimal financial knowledge altruistic personality unselfish and concern for other people and variables positively influence older malaysian chineses financial risk tolerance risktaker at the same time ages and financial satisfaction variables are negative and significantly influence financial risk tolerance riskaverse lastly these findings may contribute to the relevant authority such as retirement fund providers to formulate a proper longterm plan to ensure chinese older malaysians individual and family financial stress during retirement

quality of life and adjustment in youths with asthma the definitive version is available at 3 3 asthma is the most common chronic health condition in childhood it has a significant impact on the emotional social and physical functions of children and adolescents thus it is considered a public health problem in recent decades interest has grown in assessing the psychological adjustment and quality of life of youths with asthma researchers and clinicians agree on the importance of familyrelated factors to the wellbeing and adjustment of youths in addition some studies show that the family contributes to the variability of asthma symptoms naturally occurring family rituals have been described as protective factors for children with asthma however empirical research on this topic is scarce for example we do not know whether the protective properties of family rituals apply to different outcomes furthermore research has yet to address the processes by which family rituals are linked to positive outcomes therefore the main objective of the present study was to contribute to this body of knowledge by assessing the impact of family rituals on selfreported healthrelated quality of life and the emotional and behavioral problems of youths with asthma moreover this research examines whether the family environment is a possible avenue through which family rituals are linked to youth outcomes quality of life and adjustment in youths with asthma although there is no known cure for asthma its symptoms can be managed through medication and the avoidance of environmental triggers when its symptoms are not successfully controlled asthma is associated with numerous sleep disorders 4 school absenteeism hospitalizations emergency room visits and limitations in leisure and school activities considering these difficulties a growing body of research has examined whether youths with asthma are at a greater risk for problems with adjustment and have lower qol compared with their healthy peers in addition asthma in children and adolescents is consistently associated with lower qol more internalization problems more anxiety symptoms and more depression compared with their healthy counterparts family interaction patterns a chc diagnosis represents a challenge for youths and their families most theoretical models that aim to explain chc adaptations in childhood include family factors such as the family environment or family members adjustment as utilitarian resources in the case of asthma the pioneering empirical work of minuchin rosman e baker on psychosomatic families suggested that family functioning could exacerbate asthma crises in response to emotional stimuli thus a chc is not only a physical manifestation in an individual but also a set of reciprocal and complex effects in this sense there is increasing interest in identifying the resources available to help families deal with asthma and other chcs family rituals several authors have emphasized that family rituals such as celebrations traditions and standard family interactions are one of the ways that families organize adjust and balance essentially families use rituals to maintain a sense of stability in the quality of life and adjustment in youths with asthma the definitive version is available at 5 5 face of lifes demands in terms of organized group behavior these events include practical and symbolic components that promote family identity and provide a sense of belonging family rituals transmit lasting values family attitudes and objectives they promote unity strengthen relationships and stimulate communication and positive interaction between family members family rituals benefit individuals and families at different developmental stages several studies have established a relationship between investing in family rituals and positive outcomes in schoolage children such as academic success adolescence studies suggest that youths appreciate family rituals greater family investment in these events is positively correlated with better social skills integration identity sense of belonging and selfesteem lower attendance of psychologicalpsychiatric support and selfreported wellbeing in adolescents the literature also suggests that family rituals play important roles in families in which one of the members has health conditions for instance markson and fiese considered that family rituals are a resource for maintaining the health of the family and its members family relational environment cohesion and conflict a positive family environment has wellestablished relationships with a range of positive outcomes in children and adolescents research conducted with youths with asthma reveals positive correlations between family cohesion and clinical improvement and between family cohesion and well the definitive version is available at 6 6 being furthermore there are correlations between low family cohesion and behavioral problems higher levels of family conflict and externalization problems some authors suggest that cohesive families find it easier to prevent illness and adhere to treatment in addition maternal criticism is associated with increases in the frequency and severity of asthma attacks and higher probabilities of hospitalizations which may serve as a chronic stressor and prevent treatment compliance in children and adolescents thus criticism compromises efficient communication supervision and responsibility sharing study overview a mediation hypothesis the literature suggests that family rituals are embedded in the family environment for example family rituals and cohesion have a bidirectional relationship thus one of the ways in which family rituals are associated with wellbeing and adjustment might be through their contribution to a more positive family environment family rituals might promote positive family environments by fostering stability and security within families in a review fiese and colleagues stated that threats to cohesion occur when family rituals are interrupted when children and adolescents see family members involved in joint activities that take place in a predictable space and time they are likely to feel secure and perceive their family environment as more cohesive and less fraught with conflict quality of life and adjustment in youths with asthma the definitive version is available at 7 7 these associations suggest a meditational model in which family rituals are linked to perceptions of higher cohesion and lower conflict which in turn are linked to better hrqol and fewer adjustment problems this hypothesis has been previously tested to some degree crespo kielpikowski et al reported that parents family ritual meaning is connected to child and adolescent wellbeing via shared perceptions of cohesion the present study of 149 portuguese youths with asthma advances that research in several ways first we tested the proposed meditational model using youth reports of the meaning of family rituals second we assessed youth perceptions of cohesion and conflict and we examined three outcomes generic hrqol emotional and behavioral problems and hrqol specific to chcs the last assessment allowed us to analyze the specific challenges associated with having a chc hypotheses we had four major hypotheses h1 family ritual meaning is positively related to family cohesion and negatively related to family conflict h2 higher levels of family ritual meaning and family cohesion are associated with better hrqol 1 and fewer emotional and behavioral problems h3 higher levels of family conflict are related to poorer hrqol and more emotional and behavioral problems h4 family ritual meaning is related to better hrqol and fewer emotional and behavioral problems via increased family cohesion and decreased family conflict method participants 1 for the sake of simplicity we use the term hrqol for both specific chcs and chcs in general the definitive version is available at 8 8 the participants included 149 children and adolescents diagnosed with asthma the majority of the children were male and their ages ranged from 8 to 18 most of the participants were between 9 and 16 years old according to clinical assessments of the their disease severity 510 of the participants had level 1 asthma 302 of the participants had level 2 154 of the participants had level 3 and 27 of the participants had level 4 according to the classification of simões for the portuguese context most of the children had a low socioeconomic status 315 had a medium ses and 107 had a high ses this distribution was consistent with profiles of public health service users in portugal procedure the sample was collected at the outpatient services of three portuguese public hospitals between march and december 2010 the children and adolescents included in this study were aged between 8 and 18 years had been clinically diagnosed with asthma by a physician using the international classification system and had been ill for at least one year formal authorizations to collect data were obtained from the ethics committees of the participating institutions informed consent forms were obtained from youths between 14 and 18 years old and from the parents of younger children the youths completed the assessment protocols in a room provided for this purpose in the presence of a research assistant the childrens clinician assessed asthma severity according to the recommendations of the global initiative for asthma measures quality of life and adjustment in youths with asthma the definitive version is available at 9 9 family ritual meaning family ritual meaning was assessed with the portuguese version of the family ritual questionnaire subscales for dinner time and annual celebrations the participating youths answered 10 items presented in a forcedchoice format each subscale is composed of five items that assess family ritual meaning for each setting for example the first pair of descriptions for the dinner setting was some families regularly eat dinner together and other families rarely eat dinner together the third pair of descriptions for annual celebrations was in some families annual celebrations have special meaning for the family and in other families annual celebrations are times of strong feelings and emotions the participants were asked to first choose the description that best represented their family then to decide whether that description was really true or sort of true the four possible answers were scored using a fourpoint likert scale higher scores indicate stronger perceptions of family ritual meaning family cohesion and family conflict family cohesion and family conflict were assessed with two subscales from the family environment scale the two nineitem subscales of cohesion and conflict assess family relationship perceptions the participants responded using a likert scale ranging from one to six healthrelated quality of life the definitive version is available at 10 10 the disabkids chronic generic module was used to measure the participants subjective perception of their hrqol this instrument assesses hrqol in children and adolescents between 8 and 16 years old with chcs the participants answered 37 items including are you able to play or do things with other children and do you feel tired because of your condition with regard to the past four weeks using a likert scale ranging from one to five healthrelated quality of life the kidscreen10 measured the perception of hrqol in children and adolescents aged between 8 and 18 the kidscreen10 has a broad scope and can be administered to both healthy and chronically ill children this selfreport questionnaire has 10 items that collect information regarding last week it uses a fivepoint likert scale ranging from one to five emotional and behavioral problems emotional and behavioral problems were assessed using the child version of the strengths and difficulties questionnaire this likerttype scale has responses that range from zero to two this study used four subscales of the sdq the sum of the 20 subscale items assess general psychopathology quality of life and adjustment in youths with asthma the definitive version is available at 11 11 asthma severity clinicians assessed asthma severity according to the global initiative for asthma program guidelines based on the degree of airflow limitation and lung function variability asthma severity was divided into four categories intermittent mild persistent moderate persistent or severe persistent due to the low frequencies of participants in each asthma severity group this variable was dichotomized into intermittent versus persistent categories and dummy coded to permit correlational analyses severity information was missing for one case results descriptive analyses and correlations table 1 presents the means standard deviations cronbachs alphas and pearson correlations of the study variables we performed two manovas to assess gender differences one with the family variables and another one with the outcome measures as dependent variables using gender as a fixed factor and age as a covariate we did not find group differences family ritual meaning was positively correlated with family cohesion and hrqol conversely family ritual meaning was negatively correlated with both family conflict and emotional and behavioral problems family cohesion was positively correlated with hrqol and negatively associated with emotional and behavioral problems family conflict was negatively correlated with hrqol and positively correlated with emotional and behavioral problems asthma severity was negatively correlated with hrqol and positively correlated with emotional and behavioral problems mediation analyses the definitive version is available at 12 12 to test our mediation hypothesis we used preacher and hayess test of indirect effects we used the spss version of preacher and hayess macro and interpreted the bootstrap data by determining whether the 95 biascorrected and accelerated confidence intervals contained zero the analyses and bootstrap estimates were based on 5000 simulations we tested three multiple mediator models family ritual meaning was the independent variable family cohesion and family conflict were simultaneous mediators and gender and age were included as covariates for all analyses we then included each of the outcomes hrqol and emotional and behavioral problems one at a time the results showed that family cohesion and conflict significantly mediated the three relationships examined quality of life and adjustment in youths with asthma the definitive version is available at we conducted identical analysis to control asthma severity and the results remained unchanged finally we tested six alternative models considering at each time cohesion and conflict as independent variables family ritual meaning as the mediator variable and maintaining the three outcomes we found that only one of these mediations was significant family conflict was linked to hrqol specific to chcs via family ritual meaning discussion the present study had two objectives first to examine the associations among family ritual meaning hrqol and adjustment problems in a sample of youths with asthma and second to verify whether these relationships occur via wholefamily variables such as cohesion and conflict the two main conclusions of our study were youth perceptions of stronger family ritual meanings were associated with higher hrqol and lower levels of emotional and behavioral problems and youth perceptions of family ritual meaning were indirectly related to both hrqol and emotional and behavioral problems via perceptions of family cohesion and conflict quality of life and adjustment in youths with asthma the definitive version is available at 15 15 family ritual meaning relationships with cohesion and conflict in accordance with previous studies our results showed that when youths perceive their families as promoting frequent and symbolic events such as dinnertime and annual celebrations they also perceive their families as cohesive and report less family conflict according to fiese and colleagues the interruption of family rituals threatens cohesion because rituals promote communication positive interactions support and involvement furthermore rituals strengthen family ties thus they contribute to a sense of union and belonging over time the relationship between family ritual meaning and family conflict is less studied dubas and gerris found that families who engage in shared activities such as eating together showed less family conflict five years later according to compañ and colleagues family rituals may facilitate communication among family members ie families coordinate schedules make plans and promote problem solving all of which contribute to lower conflict levels family influences on youth hrqol and adjustment in accordance with h2 results showed that family ritual meaning was associated with improved hrqol in children and adolescents with asthma previous studies have discussed the role of family rituals in youth wellbeing within nonclinical and clinical samples research on pediatric asthma has shown that a supportive and wellorganized family environment predicts superior adaptation to illness and more positive perceptions of hrqol compared with poorly organized family 16 environments these results were expected because the family is a key element in the efficient management of asthma a possible explanation for this is that family rituals provide the rhythm and organization of daily family life that encourages medication intake as well as parental monitoring of asthma symptoms moreover asthma is associated with increases in life stress and unexpected crises that have the potential to generate more anxiety due to their unpredictability family rituals provide family stability and are likely to promote a sense of security in children and adolescents thus they are an important resource for dealing with stress related to asthma management youths who feel more secure and connected to their family are more likely to feel better about their lives not only in general but also in terms of their specific health concerns in addition to the review by fiese and colleagues and the research of fiese and wamboldt our results showed that children and adolescents in families that gather for activities with strong symbolic components such as dinnertime and annual celebrations presented higher emotional and behavioral adjustment levels family rituals are emotionallyladen gatherings where emotional regulation strategies can be taught and developed as these occasions usually promote communication among family members thus ritual events might offer youths with asthma opportunities to express their emotions and the opportunity to focus on those emotions in a safe and supportive context thus facilitating emotional regulation moreover rituals present opportunities to shape appropriate behavior thus providing protection against the development of behavioral problems in this sense our findings concur with of kiser and colleagues who found that family rituals were who argued that family rituals promote social and emotional skills in children in addition our results showed that family environment that was perceived as cohesive positively influenced youths´s perceptions of their hrqol and psychological adjustment it is legitimate to expect that a close family environment eases the introduction of and adherence to medical treatments which results in improved control of asthma symptoms fewer visits to the emergency room better quality of sleep and improvements in hrqol moreover our results complement other studies that show that a more cohesive family environment is a protective factor for families facing the challenges of dealing with a chc and leads families to adopt more adaptive coping strategies that can promote wellbeing as expected youths who reported higher levels of family conflict showed lower hrqol and more emotional and behavioral problems fiese and colleagues demonstrated that critical interaction patterns with mothers were associated with emotional problems in children with asthma our results match those of minuchin and collaborators who suggested that family environments characterized by conflict exacerbate somatic symptoms because these could be a way to avoid family conflict wamboldt et al suggested that family members may become caught in a coercive family process and tend to be less involved in managing asthma or that parental criticism leads to emotional overarousal which could directly worsen the asthma when asthma is less controlled youths may have more unexpected crises which may cause them to miss classes or activities with peers 18 these consequences deteriorate hrqol and contribute to difficulties with social integration and relationships family rituals and youth outcomes the mediation of family cohesion and conflict we found that family cohesion and conflict mediated the relationship between family ritual meaning and hrqol and between family ritual meaning and emotional and behavioral problems these results clarified the processes through which family ritual meaning is connected to the improved adaptation of youths with asthma when youths perceive that their families engage in meaningful rituals they are likely to report strong feelings of belonging and perceive family members as connected and supportive of each other in addition families who invest more in these ritual events should have more opportunities to openly discuss their opinions and feelings the main limitation of this study is its crosssectional nature which did not allow us to address the direction of causality between the variables additional research with a wider range of asthma severity spectrums in youths should be undertaken as the dichotomization of our sample may have obscure differences based on severity in addition the analyses are limited by differences in demographic variables because the sample was composed of a majority of males with a wide age range who were primarily from lowand middleclass backgrounds also the present study was based on selfreports and thus results must be interpreted with caution due to singlemethod response bias with regard to the mediation results we examined and found no consistent evidence for the alternative models which confirmed our current findings nonetheless only a longitudinal study could accurately address the issue of causality on the links between the aforementioned variables moreover although our mediation hypothesis was empirically supported there might be an additional higherorder variable that explains the relationships among family ritual meaning cohesion conflict and youth adaptation finally further studies in pediatric asthma should examine the possible effect of time from diagnosis in the aforementioned mediating processes time from diagnosis is an important factor interacting with chronic condition severity and childadolescent and family development as an ongoing process among other strengths this study included youth selfreports of family ritual meaning and overall family functioning which improves upon past research that assessed family variables via parental reports in addition the examined outcomes included a chcspecific measure the definitive version is available at 20 20 alongside generic measures such as emotional and behavioral problems and hrqol taken together these results confirm that family rituals are beneficial in terms of general adaptation and dealing with specific aspects of having a chc conclusion the present study highlights the importance of the whole family in adapting to pediatric asthma specifically the results show that there are positive associations among family ritual meaning youth hrqol and adjustment these findings contribute to the growing body of knowledge that indicates how family rituals can be a potential resource for the development of a more positive family environment and consequently improve the health and wellbeing of children and adolescents with chcs these findings have important clinical implications intervention work with families addressing family rituals offers an open road in the sense that the family rituals are already present finally because rituals address the family as a whole they present an advantageous route for therapy given the consensus that pediatric asthma is best understood and treated within the family context given that the family represents a safe structure for children and adolescents it might offer a way to help them cope with the various stressors that a chc such as asthma engenders together with other empirical studies this studys findings support the inclusion of family rituals in finally at a broader contextual level as fiese and collaborators pointed out it is important to acknowledge that family rituals can be a source of more positive environment and outcomes for youth such as healthrelated quality of life and thus facilitate ways for allowing families to consistently carry out these rituals events quality of life and adjustment in youths with asthma the definitive version is available at 23 23 pubertal status and gender journal of family psychology 16 415426 doi10103708933200164415 eaker d g walters l h adolescent satisfaction in family rituals and psychosocial development a developmental systems theory perspective psychology 16 406414 doi10103708933200164406 european disabkids group the disabkids questionnaires for children with chronic conditions handbook lengerich pabst science publishers journal of family everhart r s fiese b h asthma severity and child quality of life in pediatric asthma a systematic review patient education and counseling 75 162168 doi101016jpec200810001 fiese b h dimensions of family rituals across two generations relation to adolescent identity family process 31 151162 doi101111j15455300199200151x fiese b h pediatrics 146 171176 doi101016jjpeds200408083 fiese b h winter m anbar r howell k poltrock s family climate of routine asthma care associating perceived burden and motherchild quality of life and adjustment in youths with asthma the definitive version is available at

this crosssectional study explored the relationships among family ritual meaning cohesion conflict and healthrelated quality of life both specific to chronic health conditions and in general and the emotional and behavioral problems reported by youths with asthma participants included 149 portuguese children and adolescents between the ages of 8 and 18 who had been diagnosed with asthma and attended outpatient services at three public hospitals the results showed that stronger family ritual meaning predicted a more positive family environment ie higher cohesion levels and lower conflict levels better healthrelated quality of life and fewer emotional and behavior problems in youths furthermore family cohesion and conflict mediated the links between family ritual meaning and healthrelated quality of life and emotional and behavioral problems these results did not change after controlling for participant age gender and asthma severity the findings of this study suggest that family ritual meaning contributes to the adaptation of youths with asthma via its positive association with the family environment the implications for multicontextual interventions with families are briefly discussed with regard to the positive role of family rituals and of their potential as a modifiable factor in families with increased health challenges

introduction canadians living in rural settings are generally less healthy than their urban counterparts with higher overall mortality rates shorter life expectancy and a greater risk of death from motor vehicle accidents and suicide 1 high incidences of industrial accidents and occupational disease are prevalent in ruralbased economies such as farming fishing forestry meatpacking and mining 2 however according to nagarajanthe most pressing issue for rural canadians is a lack of access to adequate healthcare services 3 and the short supply of health professionals in rural areas may be a contributing factor according to recent workforce data occupational therapists tend to work in more heavily populated locations resulting in a lower per capita distribution of services to rural areas 4 much research has been published regarding the recruitment and retention of rural health professionals but less on the actual nature of rural practice and whether graduates are prepared during their training for the diversity of rural practice brockwell wielandt and clark recently described rural practice as challenging and far from ideal 5 major concerns for rural health professionals have been reported as professional isolation 6 7 8 9 10 large and diverse caseloads 61112 scarce numbers of service providers 6 limited availability of resources including equipment 613 and reduced opportunities for continuing professional development 610121415 a reduced rural occupational therapy workforce results in therapists using more generalist clinical skills rather than adopting a specialised approach to practice this can lead to dissatisfaction with rural practice if therapists perceive their work to be less valued by others in the profession 16 lannin and longland identified the need to acknowledge rural practice as a specialty area and encouraged universities to adequately prepare students for the realities of practice p186 8 in the medical nursing and allied health literature various strategies have been identified to rectify the shortage of rural health professionals including the recommendation that students are exposed to rural health practice issues during their training to prepare them for a career in a rural area 8 17 18 19 20 21 22 23 24 25 few studies have investigated occupational therapy education and its adequacy in preparing students for rural practice 51926 the present study was undertaken to identify the rewards and challenges of current rural practice in the canadian provinces of alberta and saskatchewan and to ascertain whether rural therapists believed their training had prepared them adequately for the diversity of rural practice methods the study used a quantitative approach with a selfadministered questionnaire approval was obtained from the university of alberta health research ethics committee and data was collected in november to december 2007 data collection and analysis because existing methods of identifying rural locations in canada were not useful for this study questionnaires were mailed out by the respective provincial professional bodies to current registrants working in rural locations both registration bodies advised they were easily able to identify rural therapists on their register the research team did not have access to any identifying data the questionnaire used in this research was originally designed for a similar australian study 5 results a total of 59 completed questionnaires were returned by participants providing a response rate of 262 however some participants did not answer all parts of the questionnaire and there are some instances of missing data demographic characteristics all study participants were female with a mean age of about 36 years approximately 95 indicated spending some time in their lives living in a rural location occupational therapy education participants were on average 22 years of age when they commenced undergraduate training the mean time since graduation was 117 years and 78 were university of alberta graduates of the 46 of participants who reported undertaking a rural fieldwork placement as part of their training 67 perceived this experience to have positively influenced them to work in rural practice positions held since graduation since graduation participants had worked in an average of three positions the average length of stay in each position was approximately 4 years greater than twothirds of these positions were in rural locations the reasons provided for leaving rural positions included relocating to another area unhappy with work environment wanting to change the area of practice contract ended family commitments and change of the number of hours worked other individual reasons for leaving positions included being promoted going to graduate school travelling overseas and semiretirement current employment details currently participants worked primarily in community healthcare settings for an average of 308 hours per week and mostly with clients who had general physical health issues greater than half the sample were employed in sole therapy positions the length of time spent in current positions was on average 5 years few participants reported having access to therapist relief the 19 of participants who advised that they were planning to leave their current positions gave reasons that included preference for city living imminent maternity leave concentrating on private practice changing practice area spouse transferred away undertaking fulltime study and going to work overseas the timing for their change in employment ranged from 1 month to 1 year access to professional support participants were asked about access to professional support they indicated that such support could be formal or informal informal support occurred mainly on an as needs basis by email telephone calls unscheduled meetings with colleagues or accessing other therapists following regular meetings formal support involved meeting with the clinical lead or a supervisor at an arranged time for a specific time with a set agenda participants received mostly informal support some had a combination of both informal and formal and 4 reported receiving formal support only while they found the length of time spent receiving professional support difficult to quantify participants suggested an average of approximately 30 min to 2 hours per month five participants did not have access to professional support because they were either sole therapists and therefore professionally isolated or they had devised other methods to gain support for example being in contact with a therapist in another region or another allied health professional on their team maintaining professional expertise all participants reported being able to maintain their professional expertise while working rurally however 46 provided no details of activities undertaken the remainder reported they had attended courses seminars workshops inservices and telehealth sessions networked and were being mentored undertook selfdirected learning including reading journal articles and used their onthejob experiences including covering in other areas of practice to maintain their professional expertise interestingly six participants advised that they experienced difficulties with this aspect of rural practice reasons provided for this were the associated costs courses were urban focussed and not appropriate for generalist practice and feeling overwhelmed by the extent of knowledge required for rural practice and not knowing how to prioritize what to learn first another participant indicated not having access to professional development because their employer was not able to reimburse costs perceived rewards in rural practice participants identified teamwork independence diversity and a flexible work schedule as some of mostly rewarding aspects of rural practice participants also commented positively on other aspects of rural living and these included good for raising children get to know everyone sense of community no commuting in city traffic know and trust neighbours you can see the stars small and friendly slower pace of life the availability of many social and recreational opportunities and having friendly workplaces were also viewed favourably perceived challenges in rural practice the lack of staff working as a generalist therapist increased travelling times and reduced access to professional support were reported as the predominant challenges of rural practice skills acquired during training that best prepared for rural practice the various clinical skills attained during their tertiary education followed by courses and educational resources and management and organizational skills were identified by participants as enabling them to cope with the diversity of rural practice while the majority of clinicians identified skills taught in the occupational therapy curricula others drew attention to external sources which they had found helpful including actual practicehandson experience in rural practice personal characteristics adaptability and creativity having some urban experience prior to undertaking a rural career having a rural background and ensuring you had a mentor before embarking on rural practice recommended inclusions for occupational therapy training in readiness for the diversity of rural practice most study participants suggested the need for additional management and organizational skills to be included in the curriculum followed by extra courses or modules covering a variety of clinical areas and more opportunities to learn about assessments that could be used in various clinical settings discussion a rural background was reported by 95 of the sample meaning that they had spent some time living in a rural location this confirms previous evidence that having a rural background is strongly correlated with working in rural practice 27 28 approximately half of the participants indicated having undertaken a rural fieldwork placement during occupational therapy training with onethird perceiving this experience to have positively influenced them to work in rural practice after graduation these findings are similar to those reported by others 52830 however rural placements do not always influence students to enter rural practice two studies reported that rural placements had actually deterred occupational therapy 5 and physiotherapy 18 students from seeking employment in a rural setting interestingly over half of the present sample regardless of whether they had had a rural placement indicated that they planned to enter rural practice lee and mackenzie 13 found that rural clinicians in their study also made a prior commitment to rural practice and therefore were not influenced by rural placements the rural therapists in the present study had a mean of 12 years experience since graduation and had worked in an average of almost three positions for approximately 4 years per position by contrast brockwell et al 5 found that australian rural therapists 5 years after graduation had worked in an average of three positions for a mean time of 17 months per position the present study found low numbers of participants had access to therapist relief and this is similar to what is reported in the available literature 121415 this lack of adequate cover can result in a massive backlog 12 of cases once the therapist returns from leave and can be a contributing factor to feelings of professional isolation should there also be a lack of direct support from another occupational therapist 8 all participants in this study were able to maintain their professional expertise while working in a rural setting however these results needed be viewed cautiously as almost half of the sample did not provide examples of activities they had undertaken this finding is still encouraging however when compared with bents study which found that only 65 of allied health professionals were able to maintain their professional expertise and develop professional knowledge while working in remote areas 6 however in this study six participants advised that they had experienced difficulties in this area because available courses seemed to be mainly urban focused not appropriate for generalist practice and expensive in a bid to identify the characteristics of current rural practice study in canada participants were asked about the rewards and challenges of their current position it is interesting to note that some aspects of rural practice considered by some participants to be challenging were seen by others as rewarding participants were more likely to identify the rewards of rural practice than its challenges highly valued aspects of rural practice included teamwork autonomy diversity flexible work schedule increased client contact job satisfaction clinical experiences gained and the rural lifestyle there is little literature available regarding the perceived benefits of rural occupational and physiotherapy practice however some of the aspects identified in this study are similar to the findings of others including varied caseload 61332 autonomy and flexibility 61132 and the rural lifestyle 111332 staff shortages the generalist nature of rural occupational therapy practice time spent travelling and coping with inappropriate referrals were the most frequently identified challenges furthermore although the majority of participants indicated they had professional support about onefifth said that they needed more the current shortages of medical and allied health personnel in canada generally and specifically in rural areas are of concern with the impact of an ageing population the demands for rehabilitation will rise over the next decade 32 in a recent review of the recruitment and retention literature 34 strategies for improving the quality of life and work environment financial incentives and marketing workload and skill mix professional development and education and training issues experienced by rural health professionals 33 rural therapists in other studies have found that the generalist occupational therapy role has led them to see themselves as a jackofalltrades 3435 however bent suggested that rural therapists are actually expert generalists by virtue of the services they offer to a wide client group with varied conditions that require a diverse range of therapeutic skills 6 the literature concerning the amount of time rural therapists spend travelling is scarce bent reported that the therapists in her study travelled vast distances in central australia while they admitted it was tiring they regarded it as an opportunity to see the outback scenery 6 a small number of participants in the present study also found travelling to be rewarding however more identified it as a challenge this may be due to the hazardous rural driving conditions in the prairie provinces of canada during winter the lack of access to professional support was reported as a challenge as was reported in several other studies 6121932 mills and millsteed interviewed former rural therapists who reported that minimal professional support contributed to them leaving rural positions 12 inappropriate referrals were also considered part of the challenge of rural practice in the present study devine reported that rural therapists were frustrated with the time involved in explaining to clients and other health professionals about their role 19 the clinical skills gained during their occupational therapy education were most frequently perceived to have best prepared participants for rural practice comparable results are reported by devine who found that rural and remote health care and health promotion subjects were considered equally important in preparing for rural practice 19 conversely brockwell et al reported that fieldwork placements were thought to have better equipped both urban and rural therapists for occupational therapy practice 5 the need to be taught management and organisational skills was the most common suggestion from participants regarding curricula changes because this would assist them to cope more effectively with the usually large and varied caseload of rural practice other studies had similar findings and their suggestions for improving curriculum content include administrative and management skills 5819 organisational skills 5 and caseload prioritisation skills 8 limitations the study limitations include the small sample size the response rate of 262 may be a consequence of the questionnaires being mailed out close to the end of the year also a few therapists commented negatively about the number of the openended questions and the time it had taken them to complete the survey interestingly a large number of questionnaires were returned unanswered with recipients indicating that they did not consider themselves rural therapists due to the resources they could easily access this highlights the need for the profession to expand its thinking about rural practice because geographic location can no longer be regarded as a reliable predictor of professional resource availability indeed some western canadian regional health boards which encompass rural communities have invested in providing their employees with extensive access to a wide range of online and telehealth resources subsequently some participants who worked in rural communities no longer considered themselves to be disadvantaged rural practitioners while these findings cannot be generalized they have produced a snapshot in time of current rural practice issues in western canada conclusion the present study identified the characteristics of rural practice according to occupational therapists who work predominantly as sole therapists in community healthcare settings in rural western canada while current rural practice appeared to be mostly satisfying there were some contradictory perceptions of such practice maintenance of professional expertise was mainly achieved with only small numbers indicating difficulties in accessing professional support while these results are more favourable than those reported elsewhere there is still a need to investigate the specific professional support needs of rural therapists on the whole participants perceived that they were adequately prepared for rural practice during their training however they made recommendations for additional management and organisational courses in the curricula to assist future therapists to effectively manage the large and diverse caseloads of rural practice finally this study has suggested that the nature of rural practice is changing due to an increase in access to online and telehealth resources in some regional areas further research will expand the professions understanding of rural practice as well as assist in the training of occupational therapists for the rural workforce

introduction currently canadians living in rural communities tend to have a poorer health status than those living in urban settings this is contributed to by the shortage of health professionals choosing work in rural and remote areas over the past decade there has been much research into the recruitment and retention of rural health professionals however little has been done to identify the actual nature of rural practice and whether graduates have been adequately prepared for the diversity of rural work the present study sought to identify the rewards and challenges of rural occupational therapy practice in western canada participants were also asked about their preparedness for rural practice after graduation and specifically about the usefulness of course work and practical skills taught as undergraduates methods participants were occupational therapists working in rural communities in the canadian provinces of alberta and saskatchewan the quantitative approach employed a selfadministered survey with closedand openended questions data were entered into spss v14 for frequency data and percentagesthe participants n 59 worked mainly in fulltime community healthcare positions with clients who had physical health issues more than half worked in sole therapy positions the average length of time in their current position was 5 years most participants reported that they were receiving informal professional support with some receiving a formal support as well participants more frequently identified the rewards of rural practice n 214 than its challenges n 112 perceived rewards included team work autonomy diversity and flexible work schedule increased client contact job satisfaction experiences gained and the rural lifestyle the most frequently mentioned challenges included staff shortages the generalist nature of rural occupational therapy practice excess time spent travelling coping with inappropriate referrals and the need for more professional support regarding participants perceptions about the course work and practical skills taught during their training that best © pm wielandt e taylor 2010 a licence to publish this material has been given to james cook university 2 prepared them for actual practice some highlighted additional valuable resources such as actual handson experience during rural fieldwork placement personal characteristics working in an urban setting prior to embarking on a rural career coming from a rural background and locating a mentor prior to working rurally some recommended increasing management and organisational skills content in the curriculum because these were considered essential skills for effective rural practice the return of unanswered questionnaires by participants who did not consider themselves to be rural therapists because of access to online and telehealth resources suggests further research is warranted into the changing nature of rural practicecharacteristics of current rural occupational therapy practice in western canada were identified overall rural occupational therapy practice appeared to be rewarding and few had difficulty in accessing professional support while on the whole the participants believed their training prepared them adequately for rural practice the acquisition of increased management and organisational skills during training was seen as necessary to effectively manage their typically large and diverse caseloads participants access to online and telehealth resources appears to have markedly changed the nature of rural practice and further research is recommended to determine the impact of such technologies

introduction the increase in life expectancy and the aging of the babyboomer generation has changed the population age structure for many countries 1 the growth in the number of elderly adults people aged 60 years and older has created the increases in public expenditures for this age group and the demand for elderly adult care programs and quality of life services living for a long time is both possible and desirable but the aging trend reflects the reality that elderly adults are having to make adjustment as they learn to deal with additional idle time resulting from retirement awareness about the changing circumstances related to aging is subtle and varies by individual many individuals may perceive that elderly adults require special attention because of the decline in physical strength cognitive function and the narrowing of their social networks as a matter of fact the majority of elderly adults are fit they live independently and they actively engage in a variety of activities 23 helping elderly adults transition into a different pattern of living while still increasing their quality of life has become a social phenomenon 4 as such efforts to identify factors that promote wellbeing as perceived by elderly adults is of growing importance and worthy of further research efforts behaviors that promote wellbeing such as leisure activity participation and attitudes toward leisure participation as well as subjective norms in the literature accumulating evidence reveals that leisure activity participation is associated with psychological health in advanced age 56 previous research efforts generally agree that leisure participation and perceived wellbeing are all positively related 7 8 9 these research projects were mostly descriptive and correlational in nature 1011 few of these studies were based on wellconstructed theoretical models as they studied elderly adults decisionmaking processes involved in a volitional and nonvolitional relation while also taking leisure participation factors into consideration more specifically a theoretical explanation concerning the formation of elderly adults psychological wellbeing and participation in a particular leisure activity over other alternatives has been rare if not totally absent as a result although descriptive and correlational in nature studies have shown the predictors that have contributed to the relation of leisure activity participation and elderly adults psychological wellbeing however they may not have adequately provided theory for health policy makers andor clinical interventions so they can build and evaluate wellconstructed leisure programs more specifically without theoretical reference models to evaluate the perceptual reasoning processes significant ambiguity exists in construct leisure programs to attract and inspire elderly adults participation and ultimately increase their perceived psychological wellbeing as such the investigation of the underlying factors leading to leisure participation behavior and its relation to psychological wellbeing in elderly adults should help interventionists devise wellconstructed programs for these individuals the theory of planned behavior was developed by ajzen and madden 12 based on the assumption that most conscious behaviors is rational and goal directed they proposed a causal link between attitudes and behavior mediated by behavioral intentions intention directly influences behavior and it is shaped by attitudes subjective norms and perceived behavioral control regarding the behavior from it was developed the tpb is a widely applied sociocognitive model of the attitudebehavior relationship including leisure participation behavior 13 14 15 similarly the technology acceptance model introduced by davis 16 has received considerable attention having become established as a frugal yet powerful model for explaining and predicting usage intentions and acceptance behavior 17 many leisure activities are acceptable for elderly adults such as practicing tai chi chuan taking a walk reading puzzle solving resting activities helping others etc the tcc process originated in china as a form of martial art and exercise and it is a popular form of physical activity among chinese population which began a long time ago 18 the tcc exercise incorporates a series of weight shifting body rotations semisquat positions and long durations which equates to brisk walking however tcc is a lowimpact slowmotion exercise which may elicit greater adherence than brisk walking leading to less attrition 19 therefore tcc is a suitable social culture leisure activity and it is also a training exercise for the prevention of accidental falls among elderly adults 18 nowadays millions of chinese practice tcc and it has become one of the most popular forms of exercise or sport especially among elderly adults elderly adults practicing tcc are selected as the study sample based on the above discussion by combining tam as a part of tpb model critical constructs were incorporated into the newly developed model thus the aim of the study was to test the applicability of tpb and tam in explaining chinese elderly adults decision making processes and factors that lead to their leisure participation and how such leisure participation affects their psychological wellbeing the results show that perceived usefulness had significantly and positively affected elderly adults attitude family members influences significantly and positively affected participants subjective norms and resource facilitating conditions significantly and positively affected perceived behavioral control furthermore perceived behavioral control attitude and subjective norm have significantly and positively affected tcc participation behavior and ultimately affected elderly adults perceived psychological wellbeing significantly and positively our primary contribution to the current literature on leisure and successful aging is to lend support for the fact that leisure activity participation is vital for elderly adults and their wellbeing so we developed a theoretical reference model to better understand the leisure participation perceptual reasoning processes of elderly adults we aim to initiate a new theoretical perspective for the field of leisure participation behavior and wellbeing of elderly adults that may help policy makers andor clinical interventionists create and employ leisure programs that will attract and inspire participation literature review theory of planned behavior ajzen and fishbein 20 proposed the theory of reasoned action which posits that most human behaviors follow a certain pattern and therefore become predictable according to tra individuals with a high degree of volitional control are able to make rational decisions the tra model is one of the intentionbased models that employs behavioral intention for the purpose of predicting subjects actual behaviors behavioral intention subsequently results in actual behavior and it is considered a function of attitude toward a behavior and toward a subjective norm attitude is associated with behavioral belief and subjective norm is related to normative belief 20 the tpb as shown in figure 1 incorporates the new dimension of perceived behavioral control into tra as one of the determinants of behavioral intention accordingly this dimension is related to control beliefs basically tpb expands the theoretical framework of tra because tra is unable to fully explain certain situations if the availability of resources and opportunities are limited as such addressing the presence of opportunities and resources which are nonvolitional in nature is important 21 actually tpb mainly offers a basic framework to explain the influence of external variables towards behavioral ideas practically one must cooperate with the theme characteristics to choose different external variables and probe the roles that these variables play attitude toward the behavior subjective norm perceived behavioral control intention behavior influences significantly and positively affected participants subjective norms and resource facilitating conditions significantly and positively affected perceived behavioral control furthermore perceived behavioral control attitude and subjective norm have significantly and positively affected tcc participation behavior and ultimately affected elderly adults perceived psychological wellbeing significantly and positively our primary contribution to the current literature on leisure and successful aging is to lend support for the fact that leisure activity participation is vital for elderly adults and their wellbeing so we developed a theoretical reference model to better understand the leisure participation perceptual reasoning processes of elderly adults we aim to initiate a new theoretical perspective for the field of leisure participation behavior and wellbeing of elderly adults that may help policy makers andor clinical interventionists create and employ leisure programs that will attract and inspire participation literature review theory of planned behavior ajzen and fishbein 20 proposed the theory of reasoned action which posits that most human behaviors follow a certain pattern and therefore become predictable according to tra individuals with a high degree of volitional control are able to make rational decisions the tra model is one of the intentionbased models that employs behavioral intention for the purpose of predicting subjects actual behaviors behavioral intention subsequently results in actual behavior and it is considered a function of attitude toward a behavior and toward a subjective norm attitude is associated with behavioral belief and subjective norm is related to normative belief 20 the tpb as shown in figure 1 incorporates the new dimension of perceived behavioral control into tra as one of the determinants of behavioral intention accordingly this dimension is related to control beliefs basically tpb expands the theoretical framework of tra because tra is unable to fully explain certain situations if the availability of resources and opportunities are limited as such addressing the presence of opportunities and resources which are nonvolitional in nature is important 21 actually tpb mainly offers a basic framework to explain the influence of external variables towards behavioral ideas practically one must cooperate with the theme characteristics to choose different external variables and probe the roles that these variables play figure 1 theory of planned behavior 12 figure 1 theory of planned behavior 12 evidence suggests that tpb strongly predicts actual human behavior 22 thus tpb has been a widely applied sociocognitive model of the attitudebehavior relationship including leisure participation behavior 13 14 15 in this study tpb is applied because elderly adults decision making process can consist of a variety of nonvolitional factors that can either diminish or enhance their opportunities to participate in tcc applying tpb as the conceptual framework of this study researchers are capable of using its welldeveloped structure to conduct an elaborate examination of the formation of elderly adults behavior in tcc and their psychological wellbeing by considering both volitional and nonvolitional factors technology acceptance model based on social psychology tra was very important to other models as it is one of the most fundamental and influential theories of human behavior the tra asserts that both the attitude towards a specific behavior and subjective norm impact behavioral intention which in turn determines actual behavior sharing the common thread with tra the tam as shown in figure 2 developed by davis 16 and originally applied in the information system field is an attitudinal model to explain the effect of system features on user acceptance davis 16 notes that individual attitude toward using a particular system or device is a function of two major factors perceived ease of use and perceived usefulness however tam deviated from tra from the start by leaving subjective norms out of the model in the attitudinal studies the attitudes are typically defined as learned predispositions that react to a particular object or objects in a favorable or an unfavorable manner 23 the core idea in studying attitudes in this way corresponds to an individuals attitude toward a particular object or objects and subsequently the changes in behaviors that result from those attitudes 24 in correlational terms when a study reveals that attitudes and behaviors are highly correlated the behavior of an individual is likely to become predictable because hisher attitude toward that specific object has been readily identified and becomes foreseeable evidence suggests that tpb strongly predicts actual human behavior 22 thus tpb has been a widely applied sociocognitive model of the attitudebehavior relationship including leisure participation behavior 13 14 15 in this study tpb is applied because elderly adults decision making process can consist of a variety of nonvolitional factors that can either diminish or enhance their opportunities to participate in tcc applying tpb as the conceptual framework of this study researchers are capable of using its welldeveloped structure to conduct an elaborate examination of the formation of elderly adults behavior in tcc and their psychological wellbeing by considering both volitional and nonvolitional factors technology acceptance model based on social psychology tra was very important to other models as it is one of the most fundamental and influential theories of human behavior the tra asserts that both the attitude towards a specific behavior and subjective norm impact behavioral intention which in turn determines actual behavior sharing the common thread with tra the tam as shown in figure 2 developed by davis 16 and originally applied in the information system field is an attitudinal model to explain the effect of system features on user acceptance davis 16 notes that individual attitude toward using a particular system or device is a function of two major factors perceived ease of use and perceived usefulness however tam deviated from tra from the start by leaving subjective norms out of the model in the attitudinal studies the attitudes are typically defined as learned predispositions that react to a particular object or objects in a favorable or an unfavorable manner 23 the core idea in studying attitudes in this way corresponds to an individuals attitude toward a particular object or objects and subsequently the changes in behaviors that result from those attitudes 24 in correlational terms when a study reveals that attitudes and behaviors are highly correlated the behavior of an individual is likely to become predictable because hisher attitude toward that specific object has been readily identified and becomes foreseeable psychological wellbeing the concept of life satisfaction or overall wellbeing is basically determined by assessments of individual life concerns 25 this concept can be considered as a cognitive and judgmental process and an evaluation of a persons quality of life based upon hisher chosen evaluation criteria 26 as a cognitive component psychological wellbeing is usually viewed as a part of a global perception of life satisfaction or overall wellbeing perceived by an individual 7 winefield et al 27 indicate that psychological wellbeing is conceptualized as a mix of positive affective state and functioning with optimal effectiveness in life huppert 28 simply notes that psychological wellbeing is about lives going well it is the combination of feeling good and functioning effectively that is to say if an individual perceives a higher psychological wellbeing the concept of life satisfaction or overall wellbeing is basically determined by assessments of individual life concerns 25 this concept can be considered as a cognitive and judgmental process and an evaluation of a persons quality of life based upon hisher chosen evaluation criteria 26 as a cognitive component psychological wellbeing is usually viewed as a part of a global perception of life satisfaction or overall wellbeing perceived by an individual 7 winefield et al 27 indicate that psychological wellbeing is conceptualized as a mix of positive affective state and functioning with optimal effectiveness in life huppert 28 simply notes that psychological wellbeing is about lives going well it is the combination of feeling good and functioning effectively that is to say if an individual perceives a higher degree of psychological wellbeing heshe may be happy confident and satisfied with life additionally heshe is likely to receive strong support from family members friends or coworkers 27 psychological wellbeing is considered as a subjective measure of ones life the subjective nature reveals problems in terms of measuring psychological wellbeing because some individuals may focus on a particular life domain while other individuals may emphasize a different life value it is generally agreed that the focus of the construct of psychological wellbeing is on the positive aspects of individual perception however the measurement of psychological wellbeing has not enjoyed a universal standard of acceptance 27 the scale of subjective wellbeing used by xu and roberts 29 include the following three dimensions global life satisfaction domain life satisfaction and positive affect ryff and keyes 30 categorize psychological wellbeing into the following six dimensions selfacceptance positive relations with others autonomy environmental mastery purpose of life and personal growth as such the key to measuring psychological wellbeing lies in the fact that researchers can be hard pressed to know the cutoff points between too much and too little concerning each persons perception preferences and individual needs 31 leisure participation behavior leisure is an essential domain or characteristic of life and concomitantly the measurement of the quality of life as well it balances individual life rhythm and it can influence ones health engaging in leisure activities also called leisure participation behavior is able to help reduce stress depression and loneliness 3233 in the literature the importance of participation in a variety of leisure activities has been welldocumented 32 from the social exchange perspective individuals participate in a leisure activity with the expectation of receiving some sort of reward or benefit searle 34 indicates that participants of a leisure activity will discontinue their participation if the rewards are perceived to be of lesser value than the cost of participating from the activity perspective both frequency and type of participation are pivotal indicators concerning wellbeing and quality of life 32 for instance silverstein and parkers 5 study revealed that leisure participation is positively related to reported leisure and life satisfaction in general researchers agree that regular participation in leisure activities is good for individual health and wellbeing conversely withdrawing from routine leisure activity is likely to negatively impact individuals and such negative impacts are particularly significant for elderly adults 35 in the longitudinal study agahi et al 36 pointed out that elderly adults may start new leisure activities and cease previous involvements due to a decrease in their physical abilities and functional status in this study leisure participation refers to the behavior of tcc exercise since the respondents of the study were elderly adults participation in tcc exercise has become one of major leisure activities in their current lives most importantly elderly adults are recommended to participate in activities with moderate strength 35 the tcc is one of the moderatestrength leisure activities particularly suitable for elderly adults hypothesis development in developing hypotheses for testing this section addresses whether psychological wellbeing is related to leisure participation behavior leisure participation behavior is associated with antecedent variables and whether these variables are related to designed belief constructs and applied tam variables previous studies linked to the proposed variables are also discussed leisure participation behavior and psychological wellbeing the psychological benefit of leisure participation is a popular topic in the field of leisure study 5 this fact is due to the belief that the psychological benefit is considered a useful evaluation criterion related to leisure activity participation 37 and is correlated with perceived quality of life 38 through leisure participation behavior individuals are able to build social networks obtain new knowledgeskills perform positive feelings and therefore improve individual psychological wellbeing conceptually leisure participation is a behavior that can increase ones health and psychological wellbeing that is leisure participation may be an antecedent in helping individuals experience psychological wellbeing 39 in the literature regular exercise behavior has been characterized as a positive leisure participation that may yield psychological benefits 40 it is believed that tcc practices are beneficial for elderly adults because tcc offers various advantages research has also shown that a positive relationship between leisure activity participation and psychological wellbeing exists 8939 by evaluating and referencing the results of prior studies the research team for this study believe that participation in tcc practices is beneficial for elderly adults this is because tcc offers exercise for the mind as well as for the body 41 through such leisure activity elderly adults may view this exercise as a means for maintaining an active mind as well as pursuing physical fitness in summary both mind and body can be exercised or activated through the participation in tcc practices as previously stated research has shown that the relationship between leisure participation behavior and psychological wellbeing is positive and as such has led to the following hypothesis hypothesis 1 elderly adults tcc participation behavior positively influence their psychological wellbeing attitude and leisure participation behavior the tpb model proposes that attitudes toward a particular behavior subjective norm and perceived behavioral control are independent components concerning behavioral intention as one of the volitional factors attitude is defined as the degree to which a person has a favorable or unfavorable evaluation or appraisal of the behavior in question 21 attitude is a function of an individuals behavioral beliefs more specifically bb is ones perceived subjective significance that exercising can lead to certain results 20 in this case elderly adults may perceive that tcc can be helpful for their health so that they demonstrate positive attitudes toward this particular behavior if a person decides to perform a particular behavior heshe tends to assess whether the benefit resulting from such behavior can outweigh the cost 42 in general an individual is likely to have a positive attitude if the outcome evaluations and results are known and positive as a result this individual is likely to perform and repeat that particular behavior 2142 which leads to the following hypothesis hypothesis 2 attitude positively influences elderly adults tcc participation behaviors subjective norm and leisure participation behavior as another nonvolitional factor in tpb subjective norm is defined as the perceived social pressure to perform or not to perform the behavior 21 more specifically subjective norms refer to the perceived beliefs or impressions of significant others who are closely associated with that specific individual and who impact hisher decision making process about whether heshe should engage in a particular behavior 2443 conceptually subjective norm is a function of an individuals normative beliefs about what significant others thoughts about acceptable and unacceptable behaviors in the tpb model subjective norms determine behavioral intention which is welldocumented in the leisure literature 44 45 46 thus in this case if significant others believe that tcc is an appropriate behavior and it is good for psychological wellbeing an individuals perceived social pressure to perform tcc may increase their motivation to conform to the preferences or opinions of their social networks which leads to the following hypothesis hypothesis 3 subjective norms positively influence elderly adults tcc participation behaviors perceived behavioral control and leisure participation behavior perceived behavioral control is the third determinant related to behavioral intention and an added factor to address a nonvolitional situation ajzen 21 defines perceived behavioral control as the perceived ease or difficulty of performing the behavior han et al 22 noted that perceived behavioral control assesses individual perception concerning ones control over situational factors that may either facilitate or restrain that behavior perceived behavior control is described as a function of control beliefs that refers to ones assessment in resourceopportunity availability if resources andor opportunities are present one would be likely to engage in that particular behavior and vice versa in this studys context if a field for tcc exercise is easy to access and the cost of joining a tcc practice is reasonable the probability of elderly adults who are willing to perform tcc would increase conversely if a field for tcc inconveniently located and joining group practices is expensive only a few elderly adults may choose to participate in this leisure activity the following hypothesis is developed hypothesis 4 perceived behavioral control has a positive influence on elderly adults tcc participation behavior 35 perceived ease of use perceived usefulness and attitude davis 16 posits that the constructs of perceived ease of use and perceived usefulness are the cornerstones of users attitudes toward using a new system perceived ease of use is defined as the degree to which a person believes that using a particular system would be free of effort while perceived usefulness is defined as the degree to which a person believes that using a particular system would enhance his or her job performance 16 the two constructs are built from the users perspective more specifically if using a specific product or system requires little effort and it is considered to be helpful to a users performance in a given task heshe is likely to use it and vice versa in this study perceived ease of use refers to the degree to which an elderly adult believes that tcc will require them to expand little effort perceived usefulness refers to the degree to which an elderly adult believes that tcc is a helpful leisure activity that aids health and relaxation past research on perceived ease of use and individual attitude indicates a positive relationship between the two constructs 1623 studies on perceived usefulness and individual attitude also reveal a positive relationship 1623 similar results were also found in the fields of sports leisure and recreation 4748 in this studys context if elderly adults perceive that tcc is not difficult to learn and perform they are likely to form a positive attitude toward such behavior if elderly adults perceive that tcc is useful for keeping their mind sharp or maintaining their physical fitness they are likely to have a positive attitude toward this particular behavior therefore the following hypotheses were developed hypothesis 5 perceived ease of use is positively associated with elderly adults attitudes toward tcc participation behavior hypothesis 6 perceived usefulness is positively associated with elderly adults attitudes toward tcc participation behavior normative belief and subjective norm subjective norms are regarded as a function of salient normative belief 49 in tpb normative norm refers to an individual perception in terms of social pressures or the beliefs of other people that a person should or should not perform a particular behavior 50 motivation to comply is defined as a persons choice of whether such person follows instructions and meets outcomes preferred by important referents 50 basically normative belief is a concept of social influence such social influence refers to accepted standards or unwritten rules of behavior which take place in a particular group community or culture it can be said that important referents in combination with the individuals motivation to comply is comprised of the prevailing subjective norms each individual has salient groups or referents around him or her salient groups or referents surround individuals and these groups may contain family members friends mentors or coworkers individuals are more likely to perform certain behaviors when they are aware of referents preferences in terms of a particular behavior 49 in our context if salient referents are able to encourage and offer suggestions to elderly adults by pointing out that practicing tcc is good for them they are likely to follow referents suggestions to participate in tcc activities in this study the important referents included family members and friends walen and lachman 51 and galleant et al 52 indicated that family members and friends are generally the most impactful individuals in shaping a particular persons point of views therefore the following hypotheses were developed hypothesis 7 family members influence is positively associated with subjective norms as perceived by elderly adults decision in participating in tcc practice hypothesis 8 friends influence is positively associated with subjective norms as perceived by elderly adults decision in participating in tcc practice control belief and perceived behavior control in tpb perceived behavior control is considered a function of control belief control belief refers to the presence of factors that may either promote or obstruct the performance of a specific behavior 53 that is if the participation of an activity is convenient for a person this particular person is more likely to participate in that activity and vice versa enabling or hindering conditions may play a pivotal role in whether a person is willing to participate in a leisure activity or not ajzen 21 addresses that perceived behavioral control can be considered the concept of selfefficacy selfefficacy refers to the belief in an individuals capabilities of how well one can execute courses of action required to deal with prospective situations 54 also selfconfidence in a persons ability is another key to an individual performing a particular behavior 55 selfefficacy influences the individual selection of activities and it can also affect determination and the amount of effort expanded during the execution process 21 in summary control belief is comprised of the internal force of selfefficacy and the external factor of facilitated conditions in this context if elderly adults perceive that they are confident in tcc and they are able to perform well they are likely to engage in an increased effort and dedicate time for this activity if doing tcc practice can be cost efficient based on a persons time availability as well as conveniently located elderly adults are likely to become involved in the leisure activity researchers 5657 have indicated that both selfefficacy and facilitation conditions are positively associated with perceived behavioral control therefore the following hypotheses were developed hypothesis 9 selfefficacy is positively associated with perceived behavioral control as perceived by elderly adults hypothesis 10 facilitation conditions are positively associated with perceived behavioral control as perceived by elderly adults summarized and integrated the hypotheses development above figure 3 materials and methods measurement to effectively assess respondents cognitive performance the development of the measurement was based on theories an extensive review of the literature related to psychological wellbeing and leisure participation behavior as well as structured interviews with five individuals who conduct tcc practices routinely the construct of perceived ease of use was measured by four statements adopted from davis 16 and cardinal 58 the construct of perceived usefulness was measured using six statements adopted from davis 16 cardinal 58 and venkatesh and davis 59 normative belief was grouped into two dimensions including family members influence and friends influence both dimensions were measured using four statements adopted from taylor and todd 55 downs and hausenblas 60 and curtis et al 61 the construct of control belief includes selfefficacy and facilitation conditions selfefficacy was measured by four statements adopted from bandura 62 facilitation conditions were measured using three statements the development of these was based on ajzen 21 and taylor and todd 55 drawing on previous studies 5063 attitude was measured by five statements based on taylor and todd 55 downs and hausenblas 60 and curtis et al 61 three statements were developed to measure the construct of subjective norm perceived behavior control was measured by three statements adopted from ajzen 21 and taylor and todd 55 four statements were used to measure the construct of leisure participation behavior the development of these statements was centered on the works of fishbein and ajzen 50 a total of eight statements were used to measure the construct of psychological wellbeing the development of these statements were adopted from ajzen 21 pouwer et al 64 hills and argyle 65 and chang et al 3 totally 48 items used for measuring eleven constructs are presented in table 1 concerning the response categories of this study a 7point likertype scale was employed to measure all variables of this study materials and methods measurement to effectively assess respondents cognitive performance the development of the measurement was based on theories an extensive review of the literature related to psychological wellbeing and leisure participation behavior as well as structured interviews with five individuals who conduct tcc practices routinely the construct of perceived ease of use was measured by four statements adopted from davis 16 and cardinal 58 the construct of perceived usefulness was measured using six statements adopted from davis 16 cardinal 58 and venkatesh and davis 59 normative belief was grouped into two dimensions including family members influence and friends influence both dimensions were measured using four statements adopted from taylor and todd 55 downs and hausenblas 60 and curtis et al 61 the construct of control belief includes selfefficacy and facilitation conditions selfefficacy was measured by four statements adopted from bandura 62 facilitation conditions were measured using three statements the development of these was based on ajzen 21 and taylor and todd 55 drawing on previous studies 5063 attitude was measured by five statements based on taylor and todd 55 downs and hausenblas 60 and curtis et al 61 three statements were developed to measure the construct of subjective norm perceived behavior control was measured by three statements adopted from ajzen 21 and taylor and todd 55 four statements were used to measure the construct of leisure participation behavior the development of these statements was centered on the works of fishbein and ajzen 50 a total of eight statements were used to measure the construct of psychological wellbeing the development of these statements were adopted from ajzen 21 pouwer et al 64 hills and argyle 65 and chang et al 3 totally 48 items used for measuring eleven constructs are presented in table 1 concerning the response categories of this study a 7point likertype scale was employed to measure all variables of this study a pilot test with 98 individuals who participated in tcc practice was conducted in order to verify the wording ease in responding and applicability of statements 66 this study made some modifications to the wording of statements as a result of the pretest the survey included items worded with proper negation and a randomization to reduce the monotony of items measuring the same construct the items were developed bilingually in chinese and english considering the linguistic difficulties of interpreting problems and to prevent misleading the participants data collection and sample profile purposeful sampling was employed in this study because a complete population list of elderly adults who performed tcc was unavailable or impossible to obtain participants were elderly adults who performed tcc practice aged 60 years or above facetoface administration was employed in this study the data collection method was approved by the research review committee of investigators affiliated institution respondents were informed that their responses to the questionnaire were absolutely voluntary the period of data collection lasted near two months from 5 july 2018 to 28 august 2018 as a result a total of 769 usable responses were collected and used in the data analysis of the 769 respondents 583 were male female respondents accounted for 417 respondents ages ranged from 60 to 86 years the average age was 697 years respondents who had graduated from middle school high school or vocational school and college were the major categories of education level the majority of the respondents indicated that they currently lived with their family members approximately 674 of the respondents revealed that they practiced tcc for at least a year among them about 473 of respondents reported at least five years of experience in tcc results of analysis descriptive statistics the descriptive statistics were analyzed by spss 22 software the results of which are listed in table 1 on average the elderly adults participation of tcc was responded positively construct validity and reliability researchers developed the structural equation model a powerful twostep multivariate technique for analyzing the causal models to evaluate the degree that proposed conceptual model containing observed multiple indicators and hypothetical constructs explained or fit the collected data the sem statistic is a multivariate technique that combines factor analysis and multiple regressions in addition to enabling the researchers to assess a series of independentdependent relationships simultaneously 67 such analytical techniques have been widely applied in recent years this study utilized the sem to empirically test the relationships between constructs using the amos 22 software program according to anderson and gerbing 68 to test and estimate the hypothesized model this work employed a twostep approach with an initial measurement model and a subsequent structural model the measurement model uses confirmatory factor analysis to determine whether the constructs are sufficiently valid and reliable thus before testing the proposed model the data were examined for the purpose of screening any violation of assumptions concerning the linear model cfa was performed to assess the underlying structure of the proposed model table 1 the results of cfa presents an overview concerning the means standard deviations and correlation among the constructs the standardized loadings of all statements ranged from 055 to 092 on their proposed constructs which exceeds the minimum hurdle level of 050 recommended by hair et al 67 these results indicated that the statements in the questionnaire were significantly associated with their specified constructs and each scales unidimensionality was satisfactory composite reliability of the underlying constructs ranged from 078 to 095 and the values exceeded the suggested value of 070 which was recommended by bagozzi and yi 69 average variance extracted was also employed for the purpose of examining the convergent validity of the measures the ave values ranged from 0545 to 0831 and exceeded the recommended value of 050 suggested by fornell and larcker 70 in addition the square root values of ave for the measured construct were larger than the correlation between each construct these values indicated that discriminant validity was satisfactory table 2 presents an overview concerning the correlations reliability coefficients and aves the foregoing analysis shows that the measurement model tests including convergent and discriminant validity and reliability measures are satisfactory note diagonals represent the square root of aves peou perceived ease of use pu perceived usefulness fmi family members influence fi friends influence se selfefficacy fc facilitation conditions att attitude sn subjective norm pbc perceived behavioral control lpb leisure participation behavior pwb psychological wellbeing cr composite reliability tests of structural model in this study the sem technique is an appropriate tool for measuring parametric values for each of the research hypotheses implemented on the basis of the tpb and the tam to determine their respective significance after assessing the measurement model we evaluated an initial theoretical model having seven constructs with six gamma paths and four beta paths as the first step in assessing the hypothesized relationships the structural equation model was evaluated by examining the χ 2 and fit indices the performed fit indices included the goodness of fit index adjusted goodness of fit index root mean square error of approximation comparative fit index and normedfit index the results indicated that χ 2 df 2328 which is less than the standard score of 3 suggested by bentler and bonett 71 the gfi had a score of 0811 exceeding the score of 08 recommended by hair et al 67 the agfi has a score of 0805 exceeding the score of 08 recommended by scott 72 the rmsea had a score of 0069 and met the requirement suggested by hair et al 67 the scores of the cfi exceeded 09 while nfi score was a little lower than 09 recommended by brown and cudeck 73 thus these indicators consistently show an acceptable fit between the hypothesized model and the data the results of hypothesis testing are presented in figure 2 the estimates of the standardized coefficients indicated that the linkages between leisure participation behavior and psychological wellbeing between attitude and leisure participation behavior between subjective norm and leisure participation behavior between perceived behavioral control and leisure participation behavior were all positive and significant hypotheses 1 2 3 and 4 were therefore supported the linkage between perceived usefulness and attitude was positive and significant however the linkage between perceived ease of use and attitude was not significant thus hypothesis 5 was supported hypothesis 6 was not supported the linkage between family members influence and subjective norms was significant but the linkage between friends influence and subjective norms was not significant hypothesis 7 was supported hypothesis 8 was not supported finally the linkage between facilitation conditions and perceived behavioral control was significant although the linkage between selfefficacy and perceived behavioral control was significant the direction of the relation was not predicted therefore hypothesis 9 was not supported whereas hypothesis 10 was supported the findings for these hypotheses showed that elderly adults psychological wellbeing is positively correlated with their participation in tcc practice behavior and their attitude toward tcc subjective norms and perceived behavioral control all seemed to impact their participation behavior in addition as shown in figure 4 the estimates of the standardized coefficients indicated that the effect of perceived behavioral control on leisure participation behavior was greater than attitude and subjective norm the effect of perceived usefulness on attitude was greater than perceived ease of use the effect of family members influence on subjective norm was greater than friends influence finally the effect of facilitation conditions on perceived behavioral control was greater than selfefficacy discussion and implications discussion in regard to measurement instrument the empirical results of confirmatory factor analyses coincide with the research findings of previous studies including davis 16 cardinal 58 venkatesh and davis 59 taylor and todd 55 downs and hausenblas 60 curtis et al 61 bandura 62 ajzen 21 pouwer et al 65 hills and argyle 64 and chang et al 3 this finding enhances the applicability of the scale in the leisure participation behavior and psychological wellbeing setting however even the reliability of subjective norm exceeded the minimum hurdle level of 070 discussion and implications discussion in regard to measurement instrument the empirical results of confirmatory factor analyses coincide with the research findings of previous studies including davis 16 cardinal 58 venkatesh and davis 59 taylor and todd 55 downs and hausenblas 60 curtis et al 61 bandura 62 ajzen 21 pouwer et al 65 hills and argyle 64 and chang et al 3 this finding enhances the applicability of the scale in the leisure participation behavior and psychological wellbeing setting however even the reliability of subjective norm exceeded the minimum hurdle level of 070 and the variance extraction measure was 0615 which also exceeded the minimum hurdle level of 050 recommended by hair et al 67 although the squared correlation with leisure participation behavior was 08 which is higher than the square root of ave this statistic did not meet the requirement of a conservative test of discriminant validity this result suggested that the measure of subjective norms and leisure participation behavior do not actually capture a distinct or isolated trait thus the result suggested that these two constructs are suitable for further investigation on the other hand for the hypothesized model by combining tam as a part of the tpb model this study endeavored to test the appropriateness of tpb in explaining the elderly adults decision making process concerning leisure participation behavior and the effect of engaging in the behavior on individual psychological wellbeing overall the results of the study verified that the proposed constructs can be the main reasons for elderly adults participation in tcc practice behavior as well as the possibility of this behavior contributing to their psychological wellbeing the results are consistent with the findings attitudes toward a particular behavior subjective norms and perceived behavioral control are independent components concerning leisure participation behavior studied by han 13 lee 14 and weimann et al 15 and also consistent with the findings that leisure participation and perceived wellbeing are all positively related as shown by silverstein et al 5 netz et al 6 ku et al 9 vozikaki et al 8 and jopp et al 39 according to the results for tcc elderly adults may become happy confident and satisfied with their current quality of life furthermore the findings of the study also verified the roles of antecedent variables which consisted of belief constructs and tam applied constructs to specifically explain the path of the proposed model the results showed one weak relation one non relation and one relation that was the opposite of the predicted relation which did not support the hypotheses the path between perceived ease of use and attitude is weak and insignificant therefore perceived ease of use providing utilitarian value does not necessarily lead to a different attraction and facilitation in tcc participation for tcc participation and practice an elderly adult needs to understand the practice rules and skills that must be learned from a mentor or read from a guidebook elderly adults may assess the tcc guidebook for practicing andor mentors teaching styles which may not be easy to understand therefore improvements are necessary the relationship between friends influence and subjective norms is also weak and not significant since salient groups or referents include family members friends mentors or coworkers most elderly adults maybe feel that they encourage being accompanied and offer suggestions from family members is enough therefore friends influence is neglected and insignificant finally the relationship between selfefficacy and perceived behavioral control was the opposite of the predicted hypothesis this observation suggests that elderly adults perceive that they are confident in executing tcc but they are unable to perform it well possibly because elderly adults think they are old their physical strength and cognitive abilities have declined and tcc is a new leisure activity for them the guidebook for practicing is not easy to understand andor mentors teaching style is not clear therefore individuals cannot practice tcc well through individual practices furthermore shehe will feel embarrassed if shehe unable to perform tcc well and handle any miscues related to tcc moreover in chinese culture elderly adults are ashamed to ask someone for help implication this study offers theoretical implications for a better understanding of the determinants of decision making processes concerning elderly adults leisure participation behavior although some limitations existing in the hypothesized model analyses the major findings of this study have significant managerial implications for health policy makers andor clinical interventions to use these participations behavior relationships first the findings indicated that elderly adults tcc practice behavior significantly affects their psychological wellbeing more so this finding also implies that through participation in leisure activities in general individuals may improve psychological wellbeing additionally elderly adults may become happy confident and satisfied with their current quality of life thus health policy makers in government andor clinical interventionists can use tcc participations as an effective way to promote wellbeing in elderly adults since the use of tcc to enhance and maintain psychological wellbeing for elderly individuals has two potential advantages 74 first tcc is a lowcost safe and easily implemented leisure activity that is performed at a low to moderate intensity second tcc requires minimal staff and equipment and it can be adopted effectively as a simple communitybased intervention thus tcc is a simple slowmovement leisure activity suitable for elderly individuals with diminished physical functioning 75 second one can emphasize the usefulness of tcc practice to attract and facilitate elderly adults participation when engaging in a particular leisure activity elderly individuals should assess the usefulness as well as the ease of both starting and comprehension of an activity in this case the finding revealed that perceived usefulness had a greater level of impact on attitude such results imply that elderly individuals need to realize the usefulness of tcc practice as mildly demanding both physically and mentally tasks that are perceived positively which increase the likelihood that individuals will start and continue the exercise third the tcc program should set in convenient locations the findings of this study indicated that nonvolitional variables play a pivotal role concerning elderly adults decision making process in tcc perceived behavioral control had the strongest influence on leisure participation behavior than attitude and subjective norm these results imply that elderly adults are more likely to engage in tcc if they have spare time feel economically sufficient and consider convenient locations for practicing this leisure activity surprisingly the findings of this study revealed that elderly adults did not have confidence in performing tcc well but they would put forth time and great effort for this activity fourth elderly adults participation rates can be enhanced via social promotion the findings of this study also revealed that family members influence is the primary factor to impact individual decision making for engaging in tcc a possible explanation is that a majority of respondents family members may consider tcc as a good leisure activity in addition the encouragement to participate in tcc practice can be good for respondents personally as well as relationally since tcc can be an exercise performed by a group of people and therefore respondents have opportunities for interactions with others individuals as an integral part of the leisure activity prior research also show that better selfreported individual health is positively correlated with the number of leisure activity events 33776 however several limitations do exist in this study first purposeful sampling was used in this study because investigators were unable to obtain a complete population list thus the results of the study cannot be generalized to all individuals who practice tcc in addition the results of the study cannot be generalized to western countries as tcc is deeply rooted in asian perspectives and values second the respondents of this study were exclusively elderly adults who practiced tcc the results of the study are not applicable for leisure activities other than tcc finally the levels of tcc activity can be varied based on skill sets and years of experiences in practice therefore the perception of performing tcc as easy or difficult can be different a tcc practitioner with several years of experience using perceived ease of use as an example may regard this leisure activity as an easy task however it may not be an easy task for a novice this topic has not been fully addressed but it does provide researchers with a direction for future investigations into this topic area moreover this study did not consider the relationship between the factors such as tcc styles frequency of practice and duration of each session with the health effects hence another area for exploration is a scoring framework to evaluate whether different tcc styles frequency of practice duration of each session interfere with the health effects and quality of life conclusions and suggestions for future research this paper takes an effort to develop and examine a theoretical explanation regarding the formation of elderly adults psychological wellbeing and participation in tcc exercise the results indicated that perceived behavioral control attitude and subjective norm are positively and significantly related to tcc participation behavior tcc participation behavior has positive and significant effects on elderly adults perceived psychological wellbeing perceived usefulness has positive and significant effects on respondent attitude the results also showed that family members influences is positively and significantly related to participants subjective norms resourcefacilitating conditions are positively and significantly related to perceived behavioral control this study explored external variables that influence attitude and subjective norm and perceived behavioral control in participating tcc and ultimately bring elderly adults perceived psychological wellbeing in china with regard to tpb constructs thus from an academic viewpoint the results of the study are consistent with evidence in the general tpb and contribute to the leisure and aging literature and develop a theoretical reference model for a better understanding the leisure participation perceptual reasoning processes of elderly adults we aim to initiate a new theoretical perspective for research in the field of leisure participation behavior and wellbeing of elderly adults from practitioners viewpoints the proposed model can provide health makers andor clinical interventionists with a theoretical model and professionals with information for building wellconstructed leisure program consumers perspective in other words the study establishes the representative dimensions of desirable leisure programs as well as the relevant indicators that measure each dimension the indicators constitute a valid and reliable measurement instrument thus such a scale can serve as a managerial tool to the extent that program providers can further evaluate program performance and initiate proper practices which are aimed at improving the services provided and inspiring participation and hence improving the psychological wellbeing of elderly adults

theoretical explanation concerning the psychological wellbeing of elderly adults as they participate in a particular leisure activity has been rare based on the theory of planned behavior and the technology acceptance model this study sought to understand the tai chi chuan tcc participation influence factors process and psychological wellbeing of chinese people a selfdeveloped questionnaire was developed to test the hypotheses of this study applying structural equation models a survey of 769 tcc participations were used to test the theoretical model the results indicated that perceived usefulness significantly and positively affect respondent attitude family members influences significantly and positively affect participants subjective norm and resource facilitating conditions significantly and positively affect perceived behavioral control perceived behavioral control attitude and subjective norm significantly and positively affect tcc participants the study lends support to the notion that leisure activity participation is vital for elderly adults and their wellbeing and it develops a theoretical reference model for better understanding the leisure participation perceptual reasoning processes of elderly adults furthermore the results offer important implications for health policy makers clinical prevention and interventions using participation behavior relationships to develop wellconstructed leisure programs to attract and inspire participation and hence improve the psychological wellbeing of elderly adults

introduction sports events can tell us much about sports symbolic and economic importance and often provide unique opportunities to study such things as journalistic mythmaking collective identification and representational othering clearly what constitutes a sports event is somewhat open to debate however the presence or absence of media is fundamental this is especially true of megaevents such as the fifa world cup and the olympic games which rely on multiple forms of media to provide a shared viewing experience for vast globally dispersed audiences indeed horne and manzenreiter argue that an unmediated megaevent would be a contradiction in terms for host nations and cities such events offer opportunities to manage images and impressions and sometimes to rebrand even winning the right to host a largescale sports event such as the olympic games can be considered a statement in itself while new streaming platforms such as dazn are challenging the still dominant position of television broadcasters social media platforms are enabling users to network share and socialize in new ways but also contribute to and shape coverage of unfolding media events as suggested by frandsen jerslev and mortensens concept of participatory liveness such developments present obvious challenges for those attempting to control coverage of events as revealed in hutchins and mikoszas insightful study of the 2008 beijing olympics these authors use the term counter mediatization to describe the circulation of footage discussion and commentary that is beyond the control of sports organizations official broadcasters and accredited news agencies and which sometimes offers radically different and much more critical assessments of unfolding events if media technologies are deepening and stretching the sports experience for fans and viewers many largescale sports events have in turn deepened and stretched to include preevents postevents and even duringevents all of which remain part of the main events orbit as it were frandsen jerslev and mortensen argue that these and other factors make the study of media events in the current conjuncture extremely complex and give rise to a number of important questions one such question is whether media events in the present day have a centre these authors suggest that even if it were possible to identify a centre this may be moving changing as the event unfolds and presenting various narrative peaks frandsen jerslev and mortensens suggestion is particularly evident in the case of largescale sports events that use a tournament style format as this format imposes a hierarchical ordering of events within the event for example the fifa world cup typically lasts several weeks and progresses from rounds or group stages to quarter finals semifinals and eventually the final itself arguably the centre of the event the olympic games provides another variation on this as it includes both individual and team sports each attracting varying levels of media and audience interest media events scholars have long recognized variations of this sort and neil oboyle article the events before the event have highlighted that while such events have a centring tendency this is never total or complete and always subject to potential disruption in this largely conceptual article i suggest that paratextual study is motivated by similar questions and assumptions and offers a potentially fruitful means of analysing the moving centres of sports events and their extended presence across media space and time paratextual study is both textual and phenomenological which is to say that it considers both the content of and relationships between texts as well as their meanings for those who produce and consume them in fact for gray paratextual study is fundamentally the study of how meaning is created just as important given our particular interest here paratextual study eschews the search for an imagined centre directing attention instead to an events unfolding temporality to paratextual prefigurations and afterimages by way of illustration i examine a boxing event in early 2023 that involved the popular british boxers chris eubank jr and liam smith chris eubank jr who uses the nickname next gen is the son of former world champion chris eubank and is currently ranked amongst the best middleweight boxers in the world liam beefy smith is also a highly ranked middleweight boxer and former wbo lightmiddleweight world champion smith hails from liverpool england where he and his four brothers have a significant support base as a boxing contest eubank jr vs smith was a great disappointment for many fans with smith winning the fight in controversial fashion in the fourth round however in this article it is the events before the event that are of primary interest to me at a press conference two days before the fight liam smith made insinuations about eubank jrs sexuality at the weighin the following day eubank jr wore a rainbowcoloured captains armband to signal his support for the lgbtq community both events generated considerable news coverage and online commentary and the mediated discourse surrounding them also included the issuing of a statement by the british boxing board of control and a public apology by sky sports in what follows i analyse these entryway events and some of the media content surrounding them and suggest that they were paratextually significant in shaping expectations and attitudes towards the main event this exercise is intended to be theoretically rather than methodologically instructive and it also demonstrates frandsen jerslev and mortensens point that the liveness of events can result in unexpected and unscripted happenings and consequently that the narrative of media events can suddenly change the choice of boxing is not arbitrary boxing events differ from other sports events in various ways for example unlike other individual sports that use a tournament format boxing events are typically staged over a single evening and comprise a main event and several undercards although these are preceded by several important preevents despite these differences one can argue that the long history of article the events before the event neil oboyle eventization in the sport has been instructive for other sports for example while media hype and buildup have become routine aspects of all sports events boxing was amongst the first sports to fully utilize and exploit the media for promotional and entertainment purposes nowadays as woodward suggests boxings most public stories are told at venues like caesars palace in las vegas where vast resources are spent on producing spectacle however one can also make the case that boxing contests were amongst the first sporting megaevents for example kimball describes the fight between heavyweights jack johnson and jim jeffries on july 4 1910 billed the fight of the century by the newspapers as a fullfledged media circus twenty thousand people attended the fight including 600 reporters following johnsons victory race riots broke out across the united states resulting in multiple deaths and generating weeks and months of media coverage such developments demonstrate that while sports events occur at particular times and places they can have lasting legacies and widespread social ramifications and can sometimes act as lightning rods for public discussions of sociopolitical issues including race gender class and sexual orientation indeed the case of eubank jr vs smith highlights how sports events are not separate from but directly imbricated in wider processes of social inclusion and exclusion despite the growth of womens boxing and sizeable viewership figures for contests involving superstars such as katie taylor claressa shields and nicola adams boxing remains a maledominated sport in respect of both athletes and fans moreover as i suggest below male boxing remains a site of compulsory heterosexuality in which nonnormative masculinities are marginalized and stigmatized the extended presence of sports events in his seminal work show sold separately jonathan gray describes paratexts as texts that orbit refer to and generally promote a primary text but are not the primary text for example in the case of a movie we might include trailers previews posters interviews with actors film reviews merchandise toys video games fan fiction and so on gray argues that while often ignored by media scholars such texts and materials play a crucial meaningmaking role for audiences in the sense that they shape and guide expectations and interpretations paratexts can be official or unofficial conservative or subversive industryor audiencemade while some might reinforce and amplify a texts intended meaning others might suggest alternative interpretations grays point is that paratexts are not inconsequential things on the contrary these orbital materials form the extended presence of texts and fill them with many of the meanings that we associate with them indeed they can sometimes overtake and subsume their texts and in time even become the text neil oboyle article the events before the event gray describes two varieties of paratext entryway paratexts attempt to capture the viewers attention and guide their interpretation while en route to a text as he puts it entryway paratexts condition our entrance to the text for example reading a review on rotten tomatoes will invariably shape ones expectations about a movie and might even prove the decisive factor when choosing to watch it in medias res paratexts are those that we encounter when a text is already meaningful to us in some way some in medias res paratexts direct our passage through the text for example previously on … segments in television serials remind viewers of storylines and characters and signal where the current episode will pick up the story others will be encountered outside of and sometimes long after consuming the primary text for example we might participate in a fan forum listen to a podcast or watch a spinoff show such as better call saul which is a spinoff of breaking bad grays point is that the phenomenological experience of a text how it is made meaningful does not begin and end with the text itself but occurs before during and after as he puts it paratexts start texts but they also create them and continue them matt hillss work is also relevant here in a novel approach hills draws insights from both paratextual studies and studies of media events to produce a richly layered analysis of the 50th anniversary of the british television series doctor who in 2013 like gray his primary interest is in questions of textual phenomenology ie what texts mean and why they are interpreted in the ways they are though he draws on paratextual studies and studies of media events hills is constructively critical of both for example he argues that paratextual studies should not only consider the relations between text and paratext but also paratext and paratext for example publicity materials for a movie rather than the movie itself might inspire a fanwork he further points out that paratexts can sometimes conflict and that fans are often keenly aware of interparatextual inconsistencies in respect of the media events literature he follows couldry in eschewing assumptions of an integrative media centre arguing instead that researchers should be attentive to the myriad narrative figurations encircling an event for hills the unfolding event is prefigured via audience expectations and produceraudience interactions configured via an array of textual materials and subsequently refigured by audience understandings and further produceraudience exchanges as well as by forms of cultural recognition paratextual study exemplified in the work of jonathan gray and matt hills directs the analysts gaze not to an isolated primary text or event but to its surrounding textuality a paratext might be a tweet an advertisement an instagram post a fan video or any number of things indeed as i suggest below one sports event and its satellite media content eg a livestreamed boxing weighin and the social media activity it generarticle the events before the event neil oboyle ates can be analysed in terms of its paratextual relationship with another sports event what is paramount in paratextual study therefore is not obsessively microscopic readings of individual texts but rather the guiding assumption that texts are clusters of meaning such an assumption permits even encourages a softening of binary distinctions between primaryoriginal and secondaryperipheral while also insisting that all texts are open contingent and susceptible to future redecoding to put it differently this approach does not assume that meaningmaking ends with the viewing of a text but continues indefinitely when applied to media events including sporting ones this approach suggests an analytical shift away from purely inthemoment interpretations grays and hillss work focuses primarily on filmic and televisual paratexts however sport is also littered with them despite this oates and vogan argue that sport scholars have generally prioritized main events and ignored much of this important secondary content such scholarly preoccupations however obscure an important feature of these mediated main events amid and surrounding them is a variety of related programming that might at first glance appear ancillary and unimportant pregame packages publicize contests by establishing story lines and predicting their outcomes interstitial commercial messages allow advertisers and media outlets to promote their brands and postgame content recaps and commemorates events like gray and hills oates and vogan argue that paratexts can reinforce but also challenge and reconfigure cultural meanings of particular relevance here given our interest in how nonnormative masculinities are stigmatised in boxing is their suggestion that paratexts can perform both hegemonic and counterhegemonic work and can therefore become important sites of struggle over the cultural meanings of sport thinking paratextually about eubank jr vs smith professional boxing matches especially ones involving popular and highly ranked fighters can take considerable time to organise schedule and stage this is largely due to the number of parties involved and the complicated and often protracted negotiations around the fight purse and how it is to be split nevertheless once a fight has been agreed and contracts have been signed and officiated a steady stream of promotion begins which typically includes press conferences interviews with fighters and trainers behindthescenes footage of training camps bio pieces promotional videos expert predictions fighter showreels and so on intermingled with this official promotional content will be a multiplicity of fanand athleteproduced content the latter increasingly central neil oboyle article the events before the event to the media buildup given that combat sports mostly involve contests between just two individuals on such occasions the media will often emphasise the aggressive hostility between competitors even when none exists in fact stead argues that interpersonal rivalries are often invented by the media nonetheless with the advent of social media hostile and taunting digital exchanges between fighters have become commonplace and are frequently the subject of news coverage in their own right as fight day approaches two important preevents or what might be termed entryway events occur a final press conference and a weighin the latter is officially required though historically was carried out behind closed doors in recent times the weighin has become pivotal in the promotion of fights indeed it has become an event unto itself often attracting thousands of fans many of whom will not attend the actual fight such events cannot simply be regarded as narrative peaks in news coverage as this entirely overlooks their paratextual significance within the extended presence of sports events as noted above entryway paratexts construct meaning by setting the stage for texts and by establishing early frames for their interpretation as gray suggests they shape the reading strategies that we will take with us into the text figure 1 charts the extended presence of eubank jr vs smith chronologically readers should keep in mind that this figure is an analytical device and clearly not exhaustive also importantly its linear depiction does not adequately reflect the possibility of future rewatching and redecoding by viewers equally some important aspects of these entryway events and their mediated liveness for example the copresence of boxers and audience are beyond the scope of the present article but warrant further study the final press conference before eubank jr vs smith took place on january 19 2023 and began somewhat conventionally both fighters were seated alongside their managers and promoters at opposite ends of a long table facing the press their faces and bodies were taut and serious their physical distance underscoring their mutual animosity boxing is a combat sport and as already noted hostile exchanges mind games and trash talk between fighters in person andor via social media is commonplace thus it is hardly surprising that when fighters are given the opportunity to speak at press conferences their discourse is often boastful aggressive and condescending towards their opponents however what was significant about the particular exchange between smith and eubank jr as i analyze further in the next section was the wholly unexpected turn it took with smiths allusive remarks shifting the focus from boxing prowess to sexual orientation at some point early on in the press conference eubank jr expressed surprise at discovering that smith had slid into his dms im used to seeing girls in my dms he said im not used to seeing guys this rather innocuous comment drew an immediate and vitriolic response from smith you go on about girls has anybody in this room ever seen you with a girl you got something to tell us you are thirtythree and you said on the programme you want kids this is for no laughs i am just asking do you want to tell us something you are putting up pictures with neymar in limousines no one in this room has seen you with a woman if you are happy just tell us it isnt a dig you have to have a woman to have a kid a somewhat bemused and nonplussed eubank jr responded that his private life was his private life and that he was happy and comfortable then he added cuttingly that he had heard smith cheated on his wife and that he would rather be gay than a cheat at the end of the broadcast sky sports presenter anna woolhouse apologized to viewers for the fighters comments she said we would like to apologise if you have been offended by the offensive language personal and homophobic remarks made up on stage shortly thereafter the british boxing board of control publicly stated that it would be reviewing the press conference and the conduct of both fighters this press conference generated considerable news coverage and social media activity and on the following day a weighin took place in front of a large gathering of fans and journalists as noted above boxing weighins have become events in their own right and often attract enormous crowds for example belleza notes that 11500 people each paying an entry fee of 10 attended the weighin for floyd mayweather jr vs manny pacquiao in may 2015 purported to be the biggest crowd ever for a boxing weighin all aspects of a weighin are meaningful from the order in which fighters walk on stage to the reception each receives from the crowd to their appearance to their stare down and who breaks eye contact first and of course their actual weights as gray suggests repetitive rituals of neil oboyle article the events before the event this sort during performative events much like the playing of a national anthem work to prepare and excite fans for the upcoming contest much of the public interest in weighins as live events also stems from the possibility perhaps even the hope that the personal animosity between fighters will become physical for example when mike tyson and lennox lewis met on stage for the weighin before their muchanticipated heavyweight bout in 2002 tyson swung a punch at lewis despite missing his actions ignited a mass brawl with wbc president jose sulaiman knocked unconscious and tyson in what was becoming his trademark move biting lewis leg nothing of this sort occurred at the weighin of eubank jr vs smith though a large audience was also present as another entryway event it was again the subject of much news and fan commentary liam smith was called onto the stage first to rapturous applause and cheering he disrobed made weight and smiled broadly at the adoring crowd while flexing his muscles eubank jr arrived second and was met with some cheering but considerably more booing which seemed to amuse him beneath his sweatshirt which he promptly removed he wore a manchester united jersey and a rainbowcoloured captains armband the latter clearly signalling his support for the lgbtq community whether eubank jr is an actual fan of manchester united remains unclear however one can assume that the gesture was intended to goad smith an avid liverpool fan shortly after appearing onstage eubank jr posted a picture of the weighin on instagram along with the caption we dont discriminate … we dont alienate we want boxing sport as a whole to be all inclusive at the time of writing there are 572 comments beneath the official sky sports youtube video of the weighin between eubank jr and smith some of which are implicitly or explicitly homophobic for example a post by a user named truth matters reads liam smith went nine rounds with canelo one of the best boxers of his generation eubank jr lost to a one armed george groves after he dislocated his shoulder lots of eubank tik tok fan boys going to lose their payday loans on this fight and be crying into their strawberry ciders another user diggad27 posted congrats to eubank for finally coming out importantly some of these oblique attacks on eubank jr were posted after the fight had actually taken place for example a post by a user named 236 reads he resembled the colors on his right arm very well in the fight another named arthur ssebuwufu posted good eubank was hammered you cant put on those silly colors and win a small number of comments beneath the weighin video are proeubank jr and prolgbtq suggesting that youtube can facilitate simultaneous oppression and empowerment for example a post by a user named gasandea66 reads omg eubank is so cool thank you for supporting the lgbtq community however it is important to add that one of the replies to this comment from a user named theoutlaw reads get article the events before the event neil oboyle outta here with that nonsense a number of commenters also mention the boxers physiques especially eubank jrs and one references his wearing a manchester united jersey i didnt know that eubank jr was a man utd fan i want him to win now as i have already suggested in foregrounding those communicative moments and textual artefacts circulating around a primary text or event paratextual study directs attention to its extended presence and unfolding temporality however this analytical orientation also helps explain situations where the seemingly central object … becomes decentered eubank jr vs smith the main event occurred on the evening of saturday january 21 2023 but as a boxing contest was far from memorable with smith winning the bout by technical knockout in the fourth round the first three rounds were largely uneventful but in the fourth smith landed a barrage of punches on eubank jr one of which a controversial left hook caused a significant haematoma beneath his left eye the referee called the fight to a halt and as a defeated eubank jr left the ring he was subjected to homophobic abuse by a spectator who had climbed over the security fence on monday january 23 less than 48 hours after defeating eubank jr in a disappointingly shortlived contest liam smith apologized for his comments at the preceding press conference during an interview on talksport he said i fully regret it and insisted that he was not a homophobic man on the same day another paratextual turn of events occurred a boxing fan using the handle spursrumourmill claimed on twitter that liam smith had illegally used his elbow in knocking out eubank jr the fans tweet included a slowmotion video of the alleged foul play to back up his claims an exemplary case of what is sometimes called forensic fandom this footage ignited a brief furore with fans and trainers on both sides as well as boxing analysts and pundits offering their own opinions as to the validity of the phantom elbow theory kalle sauerland eubank jrs promoter even claimed that he was considering making an official appeal to the british boxing board of control again these developments highlight that the boundaries between texts and paratexts or what gray describes as primary and secondary textuality are rather hazy equally they demonstrate hillss point that the relationships between paratexts including paratextual conflicts can significantly shape meanings around events male boxing as a site of compulsory heterosexuality in the previous section i suggested that in deprioritising and decentring primary texts and events in favour of an expanded notion of textuality paratextual study can enrich and deepen the study of sports events however as oates and vogan point out paratexts and responses to them can also adjust texts meanings in politicized ways emphasis added such as reinforcing sports heteronormative boundaries researchers have long argued that sport and sport media are not just dominated neil oboyle article the events before the event by men but that sport as an institution has historically perpetuated notions of male superiority for bruce the association between sport and masculinity is taken for granted while for bryson sport is an arena in which masculine hegemony is constructed and reconstructed such arguments apply equally to the sports media industry for example in sidelined sports culture and being a woman in america the american sports journalist julie dicaro documents both her own and others experiences of male bias casual misogyny and sexism in sports media organizations brysons words constructed and reconstructed remind us that discriminatory norms and practices can persist and evolve in the face of wider shifts towards diversity and inclusivity often assuming more covert forms for example in their revealing study of the attitudes and behaviour of american restaurant personnel towards black diners dirks and rice describe a range of subtle and intangible discriminatory practices notably the use of a private discourse of code words for black diners which includes canadians cousins moolies and white people more recently in a study of farright racist discourse on the swedish web mathilda åkerlund traces the increasing use of coded disguised terms for immigrants foremost of which is the term kulturberikare which she regards as a sneer at political correctness åkerlund argues that this term is used in the manner of a dog whistle to enable users to discretely selfidentify with an imagined ingroup of discontent white swedes equally as zimmer suggests the transmutation of overtly racist terms into everyday words affords users a degree of plausible deniability though not indemnity for example in 2012 a police officer in the united states received condemnation for referring to a black baseball player as a monday the meaning of this coded racial slur is somewhat unclear regardless the important point is that slurs disparage not just individuals but entire groups of people slurs are powerful highly taboo and can cause a lot of harm the great emotional weight of slurs arises from the power differential between the person using the slur and the person targeted by it where such a power differential exists the person wielding the slur is invoking and reenacting an entire historical context of violence against the targeted group the above passage is particularly pertinent to our discussion because highprofile athletes have privileged access to the media generally but especially during sports events when illjudged or deliberately prejudicial remarks can cause widespread social harm as moments of intense vortextual mediation sports events can become platforms for social commentary and even vehicles for social inclusion however they can also set in motion chains of toxic paratextuality liveness is an important factor here because it adds a level of unpredictability as frandsen jerslev and mortensen suggest it has always been a condition of liveness that things can take an unexpected turn as we have seen article the events before the event neil oboyle the liveness of sports events can sometimes activate and unearth latent discriminatory attitudes liam smiths comments at the press conference described above were clearly directed at eubank jr but what at first appeared a particularistic insult ie one directed at a particular individual was in fact disparaging of an entire group of people smith did not use a slur exactly at no point in the short exchange did he say gay queer homosexual or otherwise yet his words were loaded with accusatory innuendo indeed the import of his comments the weight of what was not said at least openly and directly invokes the phrase the love that dare not speak its name from lord alfred douglass poem two loves a phrase that captures longstanding social attitudes towards homosexuality has anybody in this room ever seen you with a girl smith asked eubank jr his question met with laughter by some members of the press a moment later he repeated the same question only this time using the word woman instead of girl at the end of their exchange he commented im not that type of way mate i like women smiths remarks call to mind euphemisms around homosexuality for example that one might be going through a phase but more importantly work to stigmatise and marginalise nonnormative masculinities above we noted that although womens boxing has grown in popularity the sport remains maledominated in respect of both athletes and fans one indication of this is the fact that womens boxing was included for the first time at an olympic games only as recently as 2012 crosson argues that boxing has long been viewed as a vehicle for the construction and expression of masculine virtues such as strength and valour and that boxing films even those that depict deeply flawed male protagonists are generally suffused with nostalgia for a strong robust masculinity although she argues that boxing is a site of contingent contradictory and subversive masculinities woodward similarly insists that essentialist and dualistic thinking pervades constructions of the sport with hegemonic status afforded to heterosexual masculinity and the subordination of other masculinities in the same vein free drawing on bruce argues that a strong correlation between acceptability and compulsory heterosexuality persists in this sport sometimes this compulsory heterosexuality is made manifest in instances of flagrant and explicit homophobia for example in 2002 during the mass brawl before mike tyson vs lennox lewis described above tyson infamously threatened to sodomise the journalist mark malinowski ill fuck you till you love me faggot tyson screamed in 2016 the legendary filipino boxer manny pacquiao caused widespread offence when he suggested on live television in the philippines that gay people were worse than animals animals are better pacquiao said they know how to distinguish male from female however liam smiths probing and coded questioning of eubank jrs sexuality an instance of what might be termed euphemistic discrimination also points to the sometimes implicit and covert ways in which compulsory heterosexuality is policed in male boxing as for smith personneil oboyle article the events before the event ally we might suggest that his words were an attempt to present a secure identity of masculinity in his initial apology following the spat with eubank jr smith commented if anyone took it personally i apologise it was always going to get a little bit heated like that at the end of the day its just words just take it with a pinch of salt however andi herring ceo and cofounder of liverpool city regions pride foundation vehemently dismissed this attempt to downplay the remarks herring claimed that smiths comments at the press conference were not only offensive but could also have serious repercussions for lgbtq people sportspeople are in a position of influence and responsibility even if they believe it to be a throwaway comment it gives licence to their fans and those who look up to them to do the same it normalises homophobic abuse and hate speech similarly jon holmes founder of sports media lgbt commented you might argue that there wasnt homophobic words or language used in that press conference but there was certainly a clear insinuation you see the spill over of something like that onto social media platforms holmes is quite correct as a cursory glance at youtube reveals indeed the comment described above by a user named truth matters which suggested that eubank jrs fans would be crying into their strawberry ciders after the fight provides another example of euphemistic discrimination likewise comments referencing brighton eubank jrs place of residence and an area with one of the largest and most vibrant lgbtq communities in britain can arguably be interpreted the same way for example a post by a user named laurence pollington which suggests that eubank lives the brighton life is undoubtedly another oblique reference to his supposed homosexuality while our focus in this article has been on boxing such sentiments are clearly not limited to this sport for example research finds that lgbtq individuals experience routine discrimination and exclusion in sports similarly in their review of extant studies hartmanntews et al find that lgbtq individuals especially gay men have been marginalised across sporting cultures with many reporting that they have witnessed homonegative episodes or been subjected to slurs offensive remarks and disparaging jokes discriminatory language that effectively polices expressions of masculinity and reinforces a heteronormative gender order concluding remarks in concluding we might ask do contemporary sports events have centres on one hand it can be argued reasonably enough that they do at least for organizers and promoters this is particularly true of largescale cyclical events that use a tournament format a format that imposes a hierarchical ordering of contests from heats or group stages article the events before the event neil oboyle to quarter finals semifinals and finals journalists too it might be argued work under the necessary illusion that there is indeed a centre as suggested by hyperbolic rhetoric about the big match the fight of the century and so on however as we have seen the reception of sports events complicates and undermines easy assumptions about centres or at the very least obliges us to ask for whom is this the centre as noted above media events scholars have long recognized this for example hepp and couldry helpfully suggest that while media events are situated and centring their temporary thickenings of media communication are never total or complete and always subject to disruption consequently they argue that analysts must always research critically the interrelation between the centering performances of media events on the one hand and the everyday appropriation of them by audiences and populations on the other i have suggested in this article that such thinking has much in common with paratextual study which aims to decentre and disaggregate media texts and events and encourages us to explore how they are partly created outside of their supposed borders it has not been my intention in this article to map all the paratextual content orbiting eubank jr vs smith a task that would be impossible anyway nor have i attempted the sort of robust extraction categorization and analysis of youtube comments performed by brigid mccarthy rather my primary aim has been to demonstrate that paratextual study can assist us in producing more nuanced and contextualised analyses of sports events put simply paratextual study compels us to consider the phenomenology of events as well as their extended textuality and temporality in grays terms the press conference and weighin described here were intrinsically part of eubank jr vs smith and much more than mere narrative peaks these entryway events were formative encounters they played a constitutive role and were generative of meaning in their own right as gray suggests paratextual study compels us to consider reception as well as production to widen our analytical lens beyond producers organizers and official promoters to also consider audience expectations interpretations and participation as such paratextual study eschews the search for an imagined centre directing attention instead to surrounding textuality to an unfolding temporality that precedes and prefigures the moment of an event in this article we concentrated on the before part of this unfolding temporality however the after part is just as important as our brief discussion of the phantom elbow theory suggests gray argues that public understandings of primary texts are generated across multiple sites by multiple paratexts but as scott points out paratexts do not simply shape understandings of primary texts but also hail or marginalize particular audiences in this way we can think of them as serving a gatekeeping function greeting certain audiences and deterring others here for example we considered boxings heteronormative gender order and how expressions of masculinity are policed in the sport neil oboyle article the events before the event both overtly and covertly as we have seen sexism and homophobia are not always explicit as oates and vogan suggest the hegemonic work that maintains sport as a male domain is sometimes decidedly slippery on april 18 2023 the british boxing board of control announced that both chris eubank jr and liam smith had been issued fines for their behaviour at the press conference described here alongside this announcement smith issued a second apology for his homophobic comments in an interview with sky sports boxing presenter anna woolhouse he said that he regrets every bit of the fight week adding that the stuff that got said at the press conference should never have been said in any form of life never mind at a boxing press conference wellmeaning as his words may have been apologies of this sort usually receive minimal media coverage relative to promotional activities and arguably do little to repair the damage caused or to assuage the anxieties of those affected however such developments further demonstrate hills point that before during and after an event a range of different paratextual voices will be heard eg those of fighters officiators fans nonfans and others generating harmonies in some cases but clashing discordantly in others an interesting postscript is that liam smith has long been a champion for autism awareness his sister is autistic and he wears the word autism on the front of his shorts this fact did little to ease the backlash he received following his homophobic remarks but it does remind us that sporting celebrities are complex representational figures and not always predictable or reliable role models as a boxing contest eubank jr vs smith was rather a disappointment the main event was not the closely matched contest it was expected to be but a cagey cumbersome affair that ended prematurely in many respects to paraphrase consalvo the preceding press conference and weighin took centre stage while the fight itself was the supporting actor regardless eubank jr vs smith as an eventtext remains unfinished it remains open to future redecoding in april 2023 it was announced that a rematch would take place and following two postponements this eventually occurred on september 2 2023 with eubank jr securing a stunning revenge win eubank jr vs smith ii was preceded by its own entryway events and surrounded by its own constellations of orbital materials however for viewers of the first fight these were encountered in medias res in other words while it was an event unto itself eubank jr vs smith ii was also a sequel it was also an extension of the previous event when considered this way we can perhaps better understand grays argument that texts are alive interminably and that there is never a point in time at which a text frees itself from the contextualizing powers of paratextuality

this article demonstrates how the concept of paratexts can be employed in the analysis of unfolding sports events drawing on the work of jonathan gray and matt hills it reflects on the extended presence of sports events across media space and time how meaning is created before during and after their apparent conclusion and how their mediated centres appear to move in the process by way of illustration it examines a boxing event in early 2023 involving the popular british boxers chris eubank jr and liam smith however it focuses on the events before the event namely the preceding press conference and weighin and suggests that these entryway events were paratextually significant in shaping expectations and attitudes towards the main event the article also demonstrates how sports events feed into wider processes of social inclusion and exclusion often acting as lightning rods for public discussions of sociopolitical issues such as race class gender and in this case sexual orientation

introduction two ukrainian women meet in a park in the mundane neighborhood of siltasaari in central helsinki a quiet and restorative place where local residents hang out and walk their dogs as they are sitting on a bench silently watching the harmonious life of a finnish family playing with their dog a captivating historical drama of war migration and human suffering in postsoviet ukraine unfolds we are in the opening scene of the finnishestonian writer sofi oksanens 2019 novel dog park written well before the russian fullscale military invasion in ukraine in february 2022 oksanens novel offers an intriguing psychological and sociological account of some of the historical backgrounds of the present war in ukraine while also envisioning how these may relate to the life of a welloff finnish nuclear family in helsinki the rendezvous of the two women olenka and daria becomes the starting point for an immense piece of memory work by the novels narrator and protagonist olenka who piece by piece recalls the events and experiences that have shaped her adult life and brought her to her present situation living a lonely life in exile in helsinki working as a cleaning lady this story brings us back to postsoviet ukraine during the early days of independence in the 1990s olenka grew up in tallinn in soviet estonia as the daughter of an estonian mother and a ukrainian father after the collapse of the ussr the family resettled in the fathers town of birth snizhne ukrainian in the donbas region in eastern ukraine driven by the fathers dream of the new possibilities for private business in this region which in soviet space was the center of the coal industry in snizhne the father teams up with his old friend maksim sokolov and together the two men become business partners in the chaotic mafia economy emerging after the dissolution of the soviet state eventually both men are killed in the brutal battle for former state properties characterizing the transition to oligarch capitalism in ukraine olenka and daria in turn make their professional careers in another booming postsoviet business the ukrainian fertility industry offering surrogacy services and egg donation to western clients and members of the new ukrainian elite as the story unfolds we learn that this is also their connection to the finnish family in the opening scene whose family joy is based on the reproductive labor of the two women dog park is a historical novel with a very topical theme which provides a captivating psychological and sociological account of everyday life in postsoviet ukraine using the topic of the fertility industry as a metaphor to illuminate also on a more general level the emerging entanglements between the east and west it is a novel dealing with the social and human consequences of the transition to capitalism in postsoviet space while also examining the ways in which the legacies of the iron curtain and cold war geopolitics continue to shape mental geographies and experiences in this part of europe as such it is a novel that deals with the significance of the cartographical shifts that have taken place in eastern and central europe during the last three decades during the cold war era the geographical imagination of europe was locked in a geopolitical opposition between the communist east and the capitalist west the dissolution of the communist eastern bloc and the soviet union during the revolutions of 19891991 led to a reconfiguration of the european political map with the central european and baltic states regaining their autonomy and independence and subsequently seeking integration into the eu and nato the process of transition and integration also led to cultural reflection on a shared european history and cultural identity and to a renewed interest in regional communities and identities as alternatives to cold war geopolitics as with regard to ukraines great neighbouring country poland czapliński has claimed that the new geopolitical situation was followed by a mental shift in orientation as polish literature and cultural debate now pushed the social imagination from the west to the north in the cold war era polish cultural identity was most often conceived along an eastwest axis with the fall of the soviet empire and polands integration into western europe polish culture was freed from the burdens of this geographical entanglement thus leaving space for new orientations and attachments as a consequence once again according to czapliński in late20thand early21stcentury polish literature and public debate one can observe a shift in orientation towards the north in which the scandinavian model of society is often addressed as a kind of social laboratory or possible model for the future development of polish society we may find the same topos of the nordic countries as progressive societies of prosperity and welfare in dog park where olenkas trajectory from a certain point also assumes the character of an urge towards the north and the dream of achieving a scandinavian lifestyle the aim of the following article is to offer a reading of dog park focusing especially on the novels representation and imagination of europes new geographies including the location of the nordic countries on the new map of europe drawing on concepts from the field of human geography a place may be defined as a space invested with meaning in the context of power departing from this notion i will examine how the action of this novel is inscribed in the geographical space of postcold war europe and how the novel negotiates new forms of attachment and affiliation as well as the experiences of difference and exclusion between the east and west and the east and north as these are expressed through the lives and migrations of the two female protagonists on the backstage of history and the postcolonial perspective sofi oksanen can be characterized as an author who is especially attentive to the significance of cultural geographies and mental borders in europe and especially concerned with the legacies and cultural memory of the cold war in a recent interview she described herself as a child brought up by swinging on the iron curtain born in 1977 as the child of an estonian mother and a finnish father working in the soviet union oksanen grew up in finland in the 1980s where she had the opportunity to visit her grandparents in soviet estonia and listen to their stories as a writer she was profoundly shaped by this crosscultural background drawing on the memories lives and destinies of her estonian ancestors under soviet rule as a public intellectual oksanen is known as an outspoken critic of the politics of finlandization finlands sovietfriendly politics during the cold war era and as a vocal critic of putins russia in a talk on the topic of putins war against women given at a conference at the swedish academy in stockholm in march 2023 oksanen evokes the fate of her great aunt violated by soviet officers during an interrogation as an example of how russia has deliberately used sexual violence as a weapon of imperial warfare a history which now seems to be repeating itself in ukraine the aunts story served as an inspiration for the 2008 breakthrough novel purge which narrates the story of three generations of estonian women subject to male sex violence and abuse oksanens bestselling novel may as such be regarded as an important literary contribution to the international commemoration of estonias recent history and the memory culture of the soviet occupation the estonian scholar eneken laanes has characterized this novel as a cultural translation of collective estonian memories of soviet state terror through the transcultural memorial form of wartime rape in her work as both a novelist and a public intellectual oksanen has been a critical observer of rising russian neoimperialism and the still more aggressive memory politics of the kremlin regime with regard to the baltic countries and other postsoviet states russian memory politics consists in denying the crimes and deportations committed by the soviet regime during the 50 years of occupation between 1939 and 1990 oksanens literary work can be seen as a way of writing back against this policy of denial by commemorating the lives and experiences of those subjected to soviet suppression and occupation oksanens novels are usually womens stories often narrating the lives and experiences of several generations of women in the previously mentioned interview she describes her main field of interest as a writer as the backstage or kitchen region of history ie the ways in which historical events and conflicts affect the daily lives of ordinary people and especially the experiences of woman special attention is drawn here to the affective and bodily experience of history and to the female body as a site of memory as the swedish feminist literary critic ebba wittbrattström has noted an important strategy in oksanens writing consist in giving a voice to the female body in order to express hitherto repressed social taboos of sexual experience this is also the case with dog park however this time the topics are not sexual violence and trafficking but instead the fertility industry oksanen has also often identified herself as a postcolonial writer pointing in particular to the role of russia as an empire which has continuously sought to exploit and colonize its european neighbors this is of course a discussion of direct relevance to the case of ukraine traditionally referred to as the breadbasket of europe due to its rich and fertile soil while in the 20th century the countrys coal reserves formed a keystone in soviet industrialization and modernization likewise the question of oksanen as a postcolonial writer is also linked to another more theoretical discussion among scholars of eastern and central european studies the question of whether concepts and perspectives from postcolonial theory can be applied to the histories and national identities of postcommunist countries do postcommunist and postsoviet countries in europe share an experience that is in any way comparable with that of former european colonies in the global south can white peoples also be subject to colonialism such questions are also of high political relevance with regard to the global reactions to russias war on ukraine as a recent multicountry poll has shown russias war on ukraine has led to a reconsolidation of unity within the west but at the same time revealed a growing gap between the west and the rest in terms of the ways the war is experienced and interpreted whereas in the west russias war on ukraine has mainly been seen as the return of a cold wartype of bipolarity between west and east between democracy and authoritarianism citizens in nonwestern countries like china and india tend to perceive it rather as a local european conflict in an increasingly multipolar world while considerable parts of the same populations even regard russia as an ally in the resistance against western domination dog park may be read as a story about russian neocolonialism in ukraine insofar as the novel depicts how the putin regime already from the time of the orange revolution in 20042005 initiated its hybrid war against ukrainian independence by supporting and staging prorussian separatist movements and demonstrations in the eastern regions of the country when in the beginning of the novel olenka returns to ukraine after having failed in a career as a model in paris few career options appear for the young woman she can either apply for a job in a local bride agency or she can let herself be enrolled in the ranks of protesters against the ukrainian state funded by russian money they need pretty faces at protests you get paid right then and they take everyone who wants it as a girl explains to her olenka eventually opts for a third solution as she signs up as egg donor in a fertility agency in the southern ukrainian metropole of dniepropetrovsk she soon advances to a position as the local managing director of the agency and it is in this capacity that she hires daria sokolova as an egg donor since the death of their father the sokolov family has been living a precarious life in poverty and daria is willing to do everything to help her family thanks to her pretty face and her healthy athletic and fertile body she soon becomes one of the most soughtafter girls at the agency her first clients being the finnish couple from the opening scene of the novel on the cover of the english edition from 2021 a blurb from the guardian presents dog park as a historical thriller about a postsoviet state where gangsters rule and the exploitation of the female body is big business no doubt dog park may be characterized as a story about the exploitation of the female body and yet this summary only presents one side of the coin as this is not only a novel about gangsters in postsoviet ukraine but also a novel about the life of a welloff scandinavian nuclear family and the consequences of western fertility tourism on the lives of former ukrainian fertility workers that being said the focus of a postcolonial reading also necessarily shifts from the russianukrainian relation to the relation between ukraine and the west and in this case more precisely the relation between ukraine and the north in such a reading the fertility industry may be read as a token for another kind of colonialization generated by western clients and western money once again turning the female body into an object of exploitation in this case not as in oksanens previous novels by means of rape sexual abuse or trafficking but in the more peaceful and socially accepted form of fertility tourism in the interview mentioned above oksanen describes how the idea for the novel came from a will to investigate how corruption affects a society in western europe and perhaps especially in the nordic countries were are prone to regard the oligarchic system of former soviet states as an exotic phenomenon which has literally nothing to do with western welfare democracies and our way of life likewise we tend to think of corruption as something that happens only in other parts of the world reading oksanens novel helps do away with such perceptions of nordic exceptionalism or selfcomplacency by showing that the two worlds are more connected and entangled with each other than we might like to think places and memories dog park is not told in a straightforward manner following a model found in other novels by oksanen the story is broken up into a series of dated entries shuffled like a game of cards intertwining past and present the plot flips between the moment of narration helsinki 2016 and flashbacks to various settings in olenkas life in ukraine 19922010 before her escape to helsinki in 2010 this narrative structure may be read as an indication of the basic experience that past and present are intrinsically entangled with each other as are the various places framing the action lives and destinies of the characters in the novel the place names given in the opening of each chapter situate the action in the concrete historical and geopolitical space of southeastern ukraine today broadly known as the war zone of the russianukrainian war likewise the choice of the dusty mine town of snizhne ukrainian as the setting for olenkas teenage life and memories is no coincidence the town of snizhne is in fact an important place of memory in modern ukrainian history and in the annals of the russianukrainian war in july 2014 this place became the center of the worlds attention when a passenger flight from malaysia airlines was shot down by russiancontrolled forces while flying over the area killing 283 passengers and 15 crew members during the 2014 prorussian unrest in ukraine the town was held by separatists since 2022 this part of the donbas region has been occupied by russia by locating the action in this specific area oksanens novel reminds us of the fact that the russianukrainian war did not begin in 2022 or with the russian annexation of crimea in 2014 but is in fact a conflict with a longer prehistory russias hybrid war against ukrainian independence was initiated already in the mid2000s through various kinds of interventions and efforts at russification including the staging of prorussian separatist movements and demonstrations like the ones we hear about in the opening of the novel when olenka is looking for job opportunities dog park is based on detailed factual knowledge on these events in recent ukrainian history and at times the novel even seems to predict the fullscale russian invasion of 2022 such as when olenka from her exile in helsinki observes the political developments in her home country id tracked the progress of the revolution from afar and sometimes was sure that russian tanks would roll into dnipro after the occupation of crimea i watched the latest russian news broadcasts on my computer to see if overnight not just crimea but all of ukraine had been added to the russian map used for weather forecasts i wasnt the only one in such formulations one easily recognize the critical voice of oksanens political essays and to some extent dog park may also be characterized as a didactic novel aiming at informing its readers about political and social conflicts in ukraine and yet as markku lehtimäki has also stressed in a detailed narratological reading of the novel dog park cannot be reduced to a mere political lecture as the political and essayistic statements are also an essential part of the novels psychological portrait of its protagonist olenka the geographical and historical anchoring of olenkas story also has another important mimetic function in the novel as the frequent use of place names bears witness to the historically contingent nature of places as well as the performative role of language and memory in the construction of geographical entities like cities states or regions as yifu tuan has stressed the very process of naming is a fundamental operation in the construction of a place likewise dog park is also attentive to the politics of placenaming as the novel deliberately alternates between russian and ukrainian placenames the alternation between varying spelling forms may at first sight seem confusing and alienating but at closer look there is also a narrative logic behind this device the metadiegetic indications at the opening of each chapter maintain the old and official russian and soviet names whereas olenkas narrative voice rooted in personal experiences and memories uses the ukrainian forms by such linguistic means the novel tells a story about an emergent ukrainian national identity and independence from russia and the soviet past the same aspect of transition is also visible from the novels descriptions of the changing urban landscape in the city of dnipro where old communist and russian tsarist monuments are removed while the citys tram system is expanded with new tramcars from germany and switzerland as signs of the new times in her job as managing director at the fertility agency olenka becomes an actor in this development exercising a great willingness to adjust to the whims and demands of the new clientele of western couples coming to ukraine to seek fertility treatments one example is her euphoria when introduced to the radisson hotels in the cities of kyjiv dnipro kharkov and odessa to meet groups of western fertility tourists once they stepped into the lobby clients believed that they were almost in europe and i felt the same way gone now were the old yellowed hotel registration cards and the musty smells typical of soviet times in this connection olenka is particularly attentive to the whims of the scandinavian clients scandinavian noses were sensitive they always complained about the cleaning products in the hotels and the smell of chlorine in the water yet the willingness to welcome western needs is also built into the very business model of the fertility agency which allows its clients to look through the files of potential donors selecting the genetic material of their future children in a satirical key scene in the novel daria becomes the subject of a detailed body examination by the female half of a helsinki couple who wants to measure the athletic potential of her genes in this situation the woman orders daria to undress and do splits daria does as she is told and acts like a welltrained horse the finnish couple are both previous gymnasts with similar ambitions for their coming children for them physical talent was a priority worth paying for in this case fertility tourism takes the form of eugenics coupled with a western ostalgia for eastern bloc olympics i loved nadia nadia comăneci the gymnast the woman said i wanted to be just like her you have so many gifted athletes over here i held back my retort by biting my lip i didnt point out that comăneci was not from ukraine but rather ceaușescus romania where this woman never would have wanted to live however to be recruited as a fertility worker not only involves a willingness to expose ones body to the critical eyes of western clients it also requires that the family histories of both olenka and daria are manipulated to avoid any unpleasant associations among the clientele thus when compiling the girls portfolios of photos and biographical details any sign indicating an unhealthy lifestyle exposure to pollution sicknesses or criminality in the family history must be erased this is the reason why the name of snizhne the dusty backwater of their adolescence years as well as the circumstances of the tragic deaths of their fathers are edited out of their biographies the fertility industry is a business that works not only through manipulations of egg cells and embryos but also through manipulations and remodeling of ukrainian social reality history and memory thus to succeed in her profession as a fertility worker olenka has had to renounce and repress that part of herself and her past life which was connected to snizhne and the memory of her father in terms of ukrainian history the fathers story was associated with the early days of independence in the 1990s and the chaotic process of transition from communism to capitalism this part of ukrainian collective memory and experience thus attains the character of a historical trauma in the novel while in her helsinki exile olenka starts remembering and recalling her memories from snizhne this act is also connected to an event in ukrainian history namely the shooting down of the malaysia airlines plane by russian separatists in 2014 this event attains an important position in the plot of the novel not only as the factor provoking olenkas selfnarration but also as the event that brings her to the decision to approach the family in the dog park afterward it was difficult to understand why an airplane exploding in the sky spurred me into motion to approach the family the russians shot down a malaysian airliner in july 2014 and this event led me to begin recklessly visiting the dog park these things should have had no connection i was in helsinki the plane went down in russianoccupied eastern ukraine and no one i knew was on board but its wreckage dropped in an area i remembered all too well … maybe the change came because the airplane blew up right over snizhne just a few kilometers from the house where my fathers parents had lived the call of the north similar to the her breakthrough novel purge dog park may be characterized as a postexilic narrative with olenka narrating her story from her exile in helsinki olenka had to flee ukraine because of her involvement in the murder of viktor kravets the son of the local oligarch viles kravets in dnipro at the time of the murder viktors wife lada kravets had just completed a difficult yet ultimately successful fertility treatment with olenka as coordinator and daria as egg donor during this process olenka becomes aware of the fact that viles kravets is identical to the man from donetsk who some 20 years earlier was responsible for the murder of her father whose body was found decapitated on a construction site through a local gangster she is offered the return of the head of her father if she will provide classified data from the agencys files about viktor in the following viktor is killed under the auspices of the agency and olenka has to flee ukraine to settle down in helsinki under a new identity leaving everything behind when leaving ukraine olenka not only had to renounce her comfortable life as the managing director at the fertility agency and leading secretary in a philanthropic fund founded by the kravets family she also had to leave her own mother and family in mykolaiv as well as her fiancé roman a man working as the righthand man of viles kravets at the time of her escape olenka was pregnant with their child but soon after her arrival in helsinki she loses the child olezhko when planning her migration from ukraine olenka was guided by the dream of a comfortable nordic lifestyle this urge toward the north is explicitly present in another key scene in the novel where olenka receives forged finnish passports from a local gangster named ivan and becomes familiar with her new identity as the finnish citizen ruslana toivonen as part of the deal she also receives passports for toivonens two daughters and a baby boy by the name of oleh which she sees as a happy omen for her own impending motherhood ruslanas baby was named oleh olezhko my olezhko that was a sign as well … oleh traced back to the same viking name helgaas my own name didnt it sound like the north was calling us as if all this had been written in the stars ages ago in her helsinki exile however olenka comes to live a life very far from her nordic dream of happiness and familial joy she lives alone without any other contacts to her previous life and relatives in ukraine other than some covert phone calls and secret visits by her mother in a cruel manner her existence echoes the life and destiny of her estonian grandmother who during the soviet era was sentenced to deportation to siberia without the right to exchange letters a fate she conceived as equal to a death sentence as mentioned already it is the external historical events of the russian shooting down of the malaysian airliner in july 2014 that makes olenka take the decision to approach the family in the dog park she begins to spy on the family online and soon also during their weekly visits to the park and she becomes acquainted with the names of the two children vaïnö and aino in the faces of whom she recognizes traces of herself and her father and the sokolov family respectively i was only visible in the boy as whispers in his features from her permanent place on the bench in the park she settles for the role as a silent spectator of the happiness and wellgroomed nordic lifestyle of the family the park bench became a soft movie theater seat i could sink into and empty my mind there i could watch the family live their life like a story that could have been mine if everything had gone differently the only occasion a contact develops between them is when one day the woman suddenly approaches her asking her to take a photo of the family without recognizing her as the original foster mother of her child in this situation olenka complies with the wishes of her former client i captured the winter landscape and their moment of radiant family bliss in a way that only a person who lacks such a dream can do when daria makes her appearance in helsinki olenka is forced to reconsider her situation she realizes she can no longer escape her past and a psychological power struggle between the two women ensues with daria mocking her former employee for her humble life situation and olenka fearing that daria has come to blackmail her or reveal her hiding place to the kravets family it turns out however that daria has not come to helsinki to settle accounts with olenka but to carry out her own desperate plan of kidnapping her biological finnish daughter aino and bring her back to ukraine the desperate and precarious situation of the two ukrainian ladies visàvis the privileged position and wellgroomed lifestyle of the finnish family is evoked not least through the novels detailed descriptions of the female body as a site of memory and history the bodies of the two ukrainian ladies and former angels of the fertility industry are both in a state of decline in her new life as a cleaning lady olenka has had to renounce the luxury and female elegance of her former life and in a symbolic gesture typical of oksanens novels the luxury shoes clothes and perfume from her time in dnipro are stored away in a suitcase in her apartment as a time capsule of her past existence similarly darias previously healthy and attractive body has also been transformed worn out by her continuous work as a foster mother and by the hormone treatments she has undergone which eventually destroyed her fertility and given her cancer darias teeth were still white and only her canines showed even the slightest hint of tobacco stains still she couldnt afford to look down on my state of decline didnt she realize how she looked before her cuticles had been healthy her nails her own without any ridges their surfaces as flawless as a newborns her fingers were easy to imagine on the strings of a violin now there were mourning bands on her nails her knuckles were chapped and her previously enviable skin looked as thin as a hotel registration card this portrait is clearly told from the perspective of a professional fertility facilitator versed in assessing the market value of other women according to the condition of their bodies flesh and skin like two fallen angels olenka and daria are depicted as devaluated bodies that have lost their former grace and are now wandering about in the finnish dog park desperately seeking contact to the children they have given life to the miserable state of darias body is also evoked as a symbolic relic of soviet times as the texture of her skin is compared to that of a soviet hotel registration card the precarious situation of the two ukrainian women is effectively contrasted with the glossy picture of nordic welfare as presented on the womans social media profiles the woman had shared with her followers some memories from the previous summer as an aperitif for the upcoming vacation season a typical shot of vacation toes sugar waxed legs pedicured nails heels rasped soft and nearby a book to signal intellectualism as lehtimäki has remarked the stylized picture of the finnish family also becomes a projection of olenkas social imagination of the north as a land of milk and honey in noticeable contrast to this in helsinki the two fallen angels of the ukrainian fertility industry are left to a precarious existence as secondclass citizens and mere spectators of the comfortable nordic lifestyle from which they are definitively excluded people like us were invisible the memory of our faces melted like snow from their minds because none of our clients wanted to remember our existence here one may also wonder why oksanen has chosen the dog park as the main nordic setting of the novel one obvious answer would be to interpret the pastoral arcadialike winter landscape of the dog park as a condensed image of the nordic welfare state and lifestyle olenka herself notices the utopian and inaccessible character of the park when initially entering the place the first time i ventured into the park under merciful cover of darkness creeping along i approached the bench where one family member often sat i sat down cautiously as if the slats were glass and took in the landscape their landscape imagining what their life must be like in a country where dogs had their own parks better maintained than the public spaces in ukraine surely no dog parks are to be found in ukraine where on the contrary people are familiar with the prevalence of packs of stray dogs as a consequence of war actions or nuclear disasters like the one in chernobyl forcing people to leave their homes the bitter irony however is that this facility of nordic welfare is not available to all citizens and the two ukrainian migrants and former fertility workers can only play the role of temporary guests and silent spectators to the show in his reading of the novel lehtimäki also emphasizes the dog park as a site of exclusion inaccessible to the disadvantaged however with regard to the topic of the fertility industry the topos of the dog park also achieves another gloomy meaning the business model of the ukrainian fertility industry as depicted in the novel has resulted in a commodification of life and human reproduction which allows western clients to shop through the catalogues of potential donors selecting the genetic material of the babies they want to produce the consumerist approach to human reproduction and having a baby thus comes to resemble the process of acquiring a pet in such a perspective dog park may also be read as a dark dystopian vision of the manipulation of life and motherhood in a posthuman age conclusion dog park offers a reflection on the new geographies of postcold war europe using the topic of the fertility industry as a metaphor to describe the emerging entanglements and new modes of exchange and cultural encounter that were established between ukraine and the west after the collapse of the soviet union the novel engages with the social and human consequences of the transition from communism to capitalism in postsoviet space but is also a story of the ways in which the legacies of the iron curtain and cold war geopolitics continue to shape mental geographies and experiences in this part of europe written well before the russian fullscale military invasion in february 2022 the novel offers an intriguing psychological and sociological account of some of the historical backgrounds to russias war on ukraine while also envisioning how they may relate to the life of a welloff finnish nuclear family in helsinki drawing on concepts from human geography feminist and postcolonial theory the present article has presented a reading of dog park focusing especially on the novels representation of europes new imagined geographies including the question of the location of the nordic countries on the new map of europe one of the findings of this reading is that the novel may be read as an articulation of the same shift in social imagination from an eastwest axis to an eastnorth axis as the one observed by przemysław czapliński with regard to polish literature and national identity at the turn of the 21 st century in dog park this imagination takes the form of olenkas urge toward the north a utopian dream of family happiness and a comfortable nordic lifestyle this dream finds its spatial materialization in the arcadialike winter landscape of the helsinki dog park which at the same times is also a place of exclusion beyond the reach of the disadvantagedlike the two ukrainian women the old cold war barrier between east and west thus persists in the forms of both economic inequality and subtle cultural distinctions finally the article discussed the relevance and potential of concepts and perspectives from postcolonial theory for describing the history and experiences of postcommunist countries in eastern europeor more precisely if the position of ukraine in recent european history can be characterized as a postcolonial relation of subordination dog park is a story about the exploitation of the female body a wellknown topic from oksanens previous novels where it has been used to visualize russias exploitation and domination of neighboring european countries in the case of dog park the same topic is used in a somewhat different manner as a way to explore the role of western and nordic fertility tourism in ukraine and its consequence for the lives of two ukrainian fertility workers in this way the perspective of a postcolonial discussion of dog park also changes from the russianukrainian relation to the relation between ukraine and the west

the article presents a discussion of finnishestonian author sofi oksanens 2019 novel dog park koirapuisto a social and psychological thriller about two ukrainian women working in the ukrainian fertility industry offering surrogacy services to western clients the novel explores some of the new modes of exchange and cultural encounter that were established between ukraine and the west after the collapse of the soviet union it presents a reflection of the social and human consequences of the transition from communism to capitalism but is also a story of how the legacy of cold war geopolitics continues to shape european mental geographies and experiences at the intersection of east and west drawing on concepts from human geography and postcolonial studies the article offers a reading of oksanens novel focusing especially on how the novel negotiates these geopolitical shifts as well as the position of the nordic countries on the changing european map

introduction 1definition and history of coparenting research over the past few decades the coparenting relationship has become a prominent area of study with scholars and practitioners alike debating the determinants of relationship quality as well as how individuals can play a crucial role in building and maintaining strong coparenting partnerships as family systems theory posits the whole family system encompasses interrelated subsystems in which family members interact in ways that cannot be fully understood by looking at dyadic relationships alone 1 acting as two managers with full agency responsible for parenting activities parents need to acknowledge and respect the others practice during contingencies and crises of parenthood accompanied by likely tensions and frustrations 23 one definition of coparenting acknowledges coparents as at least two individuals who share childrearing responsibilities upon mutual agreement 2 the practice involves parents children 2023 10 1884 2 of 23 joint cooperation that divides childrearing duties including instrumental support and emotional support after the birth of a child some of the first empirical studies focus on triadic family relations which examined parental interaction in analyses of the frequency and intensity of parents supportive or undermining behaviors of each other as well as how parents negotiate and strategize coparenting 45 built upon these observations consequent studies identified three major conceptual domains of coparenting the amount of conflict between parents regarding childrearing issues and overall household rules the extent to which parents support value and respect each other and triangulation which involves the formation of coalitions between one parent and the child to undermine the involvement of the other parent 6 this model was then expanded specifying joint family management supportundermining childrearing agreement and division of labor as its four main components 2 two years later in response to this model scholars broadened the traditional definition of parenting beyond heterosexual family units and claimed that coparenting encompasses diverse coparent identities and family structures regardless of individuals sexual orientation or relationship status 3 they also argued that flexibility is essential when defining equality in parenting and determining appropriate forms of it as coparents values and beliefs which are often influenced by cultural and environmental factors greatly shape what constitutes coparenting to them a coparent may be absent for a time but still has representational meanings for the other coparent and the child 3 the family system is dynamic with interparental interaction including coparenting support and conflict fluctuating throughout childrens early adolescence 7 compared to western countries research on coparenting in china and neighboring areas began relatively late the first article mentioning the term coparenting was published in 2004 in taiwan focusing on a sample of 309 couples raising preschool children 8 additional studies contributed to an initial wave of coparenting research in mainland china in addition to embracing the shared definition of coparenting that has been derived from mostly western research chinese scholars incorporated chinesespecific elements for the localization of the concept and its research application deepening the research in reference to models suggested by western professionals such as the ecological model of coparenting and supportive and undermining coparenting behaviors within the multilayered family system chinese scholars discussed some phenomena observed in chinese cultures and explained them with cultural factors 5910 for example different from the typically defined collaborative or hostile behaviors in english culture red face and white face is a term used to describe a more blurred coparenting pattern in chinese families in this pattern one coparent adopts a strict and firm parenting style while the other coparent takes on a more nurturing and caring role with the aim of better disciplining and educating their children 11 strict father kind mother is a specific manifestation of this coparenting strategy that is influenced by traditional gender roles 12 assessing coparenting as psychologists have endeavored to expand the boundaries of knowledge in this field the need for standardized scientific measures of coparenting relationships have become substantial several widely used psychometric measurement scales were devised to define the potential components of assessing and evaluating the interparental relationship mchales 16item coparenting scale covers four factors within family relationships family integrity disparagement communication conflict in the childs presence and coparental disciplinary activities out of the four factors family integrity and disciplinary activities are the positive coparenting behaviors and disparagement communication and conflict are the negative ones 13 eleven items involve overt and familylevel behaviors while the other five items focus on covert onetoone activities 14 by capturing expanded coparenting concepts the scale presented a diverse range of family intercourses beyond direct parenting behaviors for the child emphasizing the affection between parents 14 in his later research mchale added coparenting conflict and cohesion as two additional observable variables trained coders observed and coded the videotaped records of assessments of parents and interpreted the data to assess these two variables 15 feinberg and his colleagues also developed scales for coparenting based on a series of exploratory factor analyses and reliability analyses for feinbergs family foundations program the researchers transformed their theoretical conceptualization to three subscales that assess coparental support parentingbased closeness and coparental undermining later as subdomains of support and undermining emerged the researchers created scales to measure coparental agreement exposure of the child to conflict endorsement of partners parenting and division of labor as four other domains 16 17 18 the coparenting relationships scale offers a total score of seven subscales for the overall quality of the coparenting relationship in addition to subscale scores all the domains and the total score exhibit strong internal consistency across parental gender and time points ranging from 061 to 094 18 sometimes certain subscales were extracted and regrouped to measure positive and negative coparenting as well 19 the scale was later translated and revised in other cultures such as italianand portuguesespeaking cultures in china the original seven subscales were shortened to six and the items were also revised 20 the coparenting inventory for parents and adolescents relied on selfreports of parents and children 21 the inventory consists of cooperation conflict and triangulation as three dimensions of coparenting however instead of considering younger children like infants or toddlers adolescents and their parents were the subjects being studied the researchers examined the reliability and validity of the scale the convergence between parents was satisfactory while convergence between parents and their children was weaker yet still statistically significant the analysis supported the salience and necessity of all three dimensions in regard to coparenting some typical types of coparenting patterns assessed with the use of these scales include cooperative families and conflictual families while the former represents connectedness and higher functioning the latter represents more distress and disagreements 2223 some other coparenting patterns though less commonly mentioned in the literature indicated high levels of cooperation and conflicts or disconnected families with low levels of the same 2223 however even though coparenting scales have been developing for many years with various measures created based on different criteria none of these scales are applicable across all family structures and cultures for this study we employed a coparenting scale that we had previously developed which was designed to be more adaptable and flexible this scale was developed by examining relevant literature and combining and condensing items from previous instruments to capture the most important factors outlined in prior scales through the refinement of the emergent themes some common factors were identified across prior research the items included in these factors were factor analyzed in exploratory analysis testing the internal validity of factor structure assembled in different ways until five distinct factors were identified in the coparenting scale used for the current study trust communication animosity valuing the other parent and respect five factors 131 trust as most definitions agree trust consists of peoples expectation that anothers actions will be beneficial favorable or at least not detrimental to them 24 25 26 the way in which people trust others is largely dependent and shaped by their existing experience of being attached to others especially early caregivers secure individuals feel trust due to previous positive trustrelated memories and the ability to set proper relationship goals and strategies in close relationships 27 28 29 30 they also tend to be more willing to commit and build interdependence 3132 a higher level of trust plays the vital role in romantic relationships of reducing negative couple interpersonal outcomes and facilitating positive ones in particular trust serves as a mediator between attachment orientations and relationship outcomes 33 it was found to mediate the relation between female attachment anxietymale attachment avoidance and relationship satisfaction 34 the trust a mother has for her partner mediated her attachment avoidance and coparenting relationship quality 33 a causal relationship was also discovered between destiny beliefs and forgiveness where individuals experiencing the state of attachment anxiety with stronger destiny beliefs are slower to show forgiveness towards their partners 35 with partnerspecific trust mediating the causal relationship the higher level of trust leads to a greater likelihood of forgiveness the research indicated that trust was a significant mediator in explaining an additional 34 of the variability in coparenting conflicts and 35 of the variability in parenting alliances valuing the other parent the degree to which coparents are committed to coparenting is influenced by their mutual feelings towards each other 36 in the process of making plans and taking care of the children coparents may encounter differences in their perspectives and preferences as two coparents witness their childs behaviors they may pursue different approaches to guide the childs development by either actively intervening or going with the flow however the interparental dynamics can be supportive as long as both parents recognize acknowledge and value the potentially distinct qualities inherent in the other parents character or discipline beliefs conversely if one coparent assumes more responsibility for childrearing and possesses more information and authority about the children they may engage in restrictive gatekeeping which refers to the difficulty of relinquishing part of the coparenting responsibilities to the other coparent 36 proper endorsement of another parents parenting involves peoples positive attitudes and behaviors towards their partner regarding childrearing issues 18 this affirmation can be physical or verbal in the presence of the child or not as reflected in everyday life 14 when both coparents value each others role in raising their children it fosters an atmosphere of collaboration and helps to minimize conflict the positive effect of parents working together is particularly evident in stressful situations where reciprocal interparental support and agreement leads parents to work together to solve problems 3738 the active involvement of multiple caregivers helps each caregiver effectively manage daily challenges in childrearing in the context of everyday life maintaining a positive coparenting relationship can benefit the entire family resulting in fewer behavioral problems in children and serving as an indicator of both parents actively contributing to parenting as a unified team 39 respect in order to establish and maintain a successful coparenting relationship it is crucial for partners to collaborate closely and form a strong parenting alliance 240 the idea of the parenting alliance highlights the importance of partners perceptions and feelings about the quality of their coparenting relationship rather than just their interactions even if partners communicate well and make joint decisions their perceptions and attitudes toward each other can still have a significant impact on the success of their coparenting relationship respect is an important but often overlooked aspect of this alliance as it goes beyond just being polite and courteous to the other person and requires actively valuing and being open to the thoughts and behaviors of the other person 41 in romantic relationships where power balance is sought respect is commonly associated with traits such as trustworthiness love care and acceptance and is generally associated with emotional warmth and reciprocity 42 respect is a core value in marital relationships along with commitment intimacy and forgiveness and typically accompanies feelings of admiration and fondness for a partner 4344 although it is not defined similarly across writings and studies empirical studies have demonstrated that respect is closely related to the level of commitment partners have to their relationship their ability to cope with relational trauma their overall satisfaction with the relationship and their willingness to engage in prosocial behaviors 4546 insufficient respect received can be devastating to the maintenance of the coparenting relationship it turned out fathers perception of bad coparenting can lead to their withdrawal from bearing parenting responsibilities and the effect was observed to be less obvious in mothers 47 communication coparents utilize both instrumental and affective communication to exchange information instrumental communication involves discussing basic life issues that require agreement while affective communication involves sharing emotions and feelings by employing these two types of communication consistently parents support each other in response to both negative and positive events that arise in their daily lives to manage challenging situations together partners engage in dyadic coping which entails both partners engaging in a dyadic appraisal of the circumstance and communicating about it with each other 2448 coparents also capitalize on positive events to share happiness and enhance the benefits they experience 49 achieving such synchronization of coparents mental states however requires clear and direct communication clarity ensures the message conveyed is not vague or camouflaged directness requires the message to be directly brought to the other coparent without any intermediaries 50 similar communicative styles also apply to effective parentchild conversations the increased level of conversation orientation is beneficial for children to align the expectations and experiences of parentchild relationships 51 the benefit of effective communication is obvious when one coparent communicates an event it allows the other to respond which can strengthen their bonds and attachments 24 this aligns with the intimacy model proposed in 1988 in which selfdisclosure and response is the foundation to satisfy both parties needs in the interpersonal exchange process since both help to build intimacy in romantic relationships 29 in fact this set of exchanges was named matching support as a request for advice followed by informational support or the disclosure of emotions followed by emotional support 52 providing matching support to the partner who seeks an active response was predictive of higher perceived partner sensitivity and higher marital satisfaction 52 by learning about each other and reducing the gap between perceptions coparents can deepen their understanding and connection which in turn strengthens their relationship on the other side negative communicative patterns within married couples can be devastating to the relationship four types of specific negative behaviors that increase marital conflict and may lead to divorce were listed in the relevant research piececriticism defensiveness contempt and stonewallinglabeled as the four horsemen of the apocalypse 53 criticism involves complaining and attacking the person being criticized defensiveness entails an ineffective selfprotective response in a conversation that can be a counterattack contempt causes psychological harm to the partner through the expression of disgust and disrespect stonewalling occurs when one withdraws from conversation and distances themselves from the partner animosity animosity is a key factor that induces conflicts between parents and dysfunctional interpersonal dynamics it is characterized as a negative global assessment of another partner who is judged to be deserving of no respect as a parent 54 various forms of animosity such as global criticism corrosive contempt shielded defensiveness and passive stonewalling all interfere with normal parenting negotiations and can lead to accumulated stress frustration and emotional distress for both parents in the long term 5054 this massive spiral eventually builds up escalating negative reciprocity within the relationship as the partners guardedness becomes more severe it can result in discouragement towards the other party or even deprivation of opportunities for the other person to spend time with the children this impact is particularly pronounced in men as children 2023 10 1884 6 of 23 their reported depression is largely influenced by coparenting experiences shaped by their female partner 55 animosity can have a spillover effect on the parentchild relationship as the presence of marital animosity experienced by either parent can negatively impact their partners relationship with the child 5657 this can create a conflictridden parenting environment with parents deflecting and redirecting their anger toward their children resulting in less interaction responsiveness and withdrawal from children and an increase in the use of stricter control or punishments 45859 the toxic highconflict interparental dynamics can have a detrimental impact on the functioning of all the other relationships within the family system studying coparenting beyond the western scope while coparenting research has made significant progress in developed western countries there is a significant lack of knowledge about what coparenting and family relationships mean to the other parts of the world particularly china a large number of chinese scholars have focused on grandparentgrandchild intergenerational coparenting instead of parental coparenting in which parents directly bear most of the coparenting responsibility an integrative intergenerational coparenting framework was invented encompassing dimensions beyond the traditional aspects of parenting measurement for example power and authority 60 this trend took place because of the unique structural challenges chinese families have faced over time in rural areas of china many parents opt to work in cities for higher salaries to support their family leaving their children to be cared for by grandparents who reside in their hometowns in cities since the price of housing continues to climb parents usually have to live with grandparents because they themselves cannot afford an apartment 6162 these culturespecific features create a threegeneration family structure in most parts of china which impedes chinese scholars from directly applying western theories about nuclear families to researching chinese families a 2017 national survey found that over 80 of grandparents directly participate in childcare activities for their grandchildren often assuming parental responsibilities 63 due to the prevalence of the phenomenon of raising children across multiple generations most scholars focus on intergenerational parenting in contrast coparenting between parents seems less common as a form of childrearing in china and has not gained sufficient attention from researchers the lack of research on chinese nuclear families has negative implications that extend to the field of social work limited data and results make it challenging for scholars to advocate for policy changes that directly target these families and promote family welfare 64 even as some scholars bring attention to parenting in nuclear families the meaning and implications of parenting styles may differ in china because of culturally specific beliefs derived from taoism and confucianism 65 66 67 chinese parents often base their parenting behaviors on the traditional concept of training children to temper their willpower and cultivate their perseverance which typically involves a higher degree of devotion and strictness 66 parental strictness can be viewed as a display of both concern and caring depending on which of the two forms it manifests parental control or parental organization 6568 as long as the parents parenting behavior fits into the universal framework of the authoritative parenting style it is believed to have a positive impact on the overall development of chinese children resulting in fewer internalizing 69 70 71 72 to understand each cultures coparenting philosophy at a deeper level sociocultural lenses are necessary to provide insight into the environment which shapes patterns of thinking and behaving rather than simply emphasizing research on parentchild interactions or couple relationships which overlook parenting context the inclusion of coparenting helps target interparental relationships and produces meaningful results to inform potential future directions in crosscultural coparenting research until now chinese and english literature have explored coparenting separately with minimal intersection and crosscultural comparison despite the fact that scholars have accumulated rich knowledge about coparenting within their respective countries or areas this study aims to bridge the gap between these two cultures and stimulate conversation on coparenting ideologies that are shared or divergent among parents from the other side of the world through preliminary exploration this study aims to establish a significant foundation for guiding future crosscultural research efforts in this area this research will not only inform the analytical strategies needed for comparing chinese and english cultures but also for any other two cultures the present study and the research questions in the present study we examine the validity of the coparenting measurement tool copafs which contains five factors to test the feasibility of applying it in a chinese context furthermore we utilize this tool to compare differences in coparenting ideologies across english and chinese cultures with a specific focus on married couples the data analysis quantitatively accounts for differences in the strength of associations between englishspeaking and chinese parents and furthermore explores the key determinants causing such differences materials and methods this study consists of four questions 1 does the measurement model underlying the copafs scale exhibit a good fit with the data gathered from chinese parents 2 what are the differences in the relative importance of each factor in terms of each of the factor loadings on coparenting as the latent construct compared between the englishspeaking parents and the chinese parents 3 does gender significantly account for the variation on coparenting as well each of the five factors measured by the copafs scale 4 does culture significantly account for the variation on coparenting as well each of the five factors measured by the copafs scale in respect to each of these research questions we offer the following hypotheses h1 the copafs measurement model exhibits a good model fit on the data collected from married chinese parents h2 the relative importance of the factors in terms of factor loadings on coparenting as the latent construct varies significantly between the englishspeaking parents and the chinese parents h3 gender significantly accounts for the variation on the copafs scale as a whole and on each of the five factors both for englishspeaking parents and for chinese parents h4 culture significantly accounts for the variation on the copafs scale as a whole and on each of the five factors both for englishspeaking parents and for chinese parents instruments coparenting was measured using the short form 27item version of coparenting across family structures scale which was developed by michael saini and marsha kline pruitt and validated in their followup study published in 2019 73 figure 1 shows the structure of the model children 2023 10 1884 10 of 23 instruments coparenting was measured using the short form 27item version of coparenting across family structures scale which was developed by michael saini and marsha kline pruitt and validated in their followup study published in 2019 73 figure 1 shows the structure of the model the scale comprises 5 subscales animosity value trust respect and communication and is intended to measure coparenting dynamics across all family structures the 27 items are each categorized into one of the five subscales and were measured by a 5point likert scale ranging from 1 strongly disagree to 5 strongly agree all items were originally developed in english then they were translated by one mandarin native speaker and were reviewed and finetuned by a mandarinspeaking research assistant and a sociology professor at a leading chinese university with expertise in the field of coparenting the triple check process ensured the accuracy of the statements and their cultural adaptations due to linguistic subtleties when arranging all the items on the survey the order was randomly shuffled so items would not cluster together around each factor in the original survey some questions are positively phrased while some are negatively phrased a strong agreement with a high score on some questions may refer to a low level of the attribute being measured while other questions are measured in the reverse way to have all the directions of the questions consistent for later addition of the total scores the scores on questions 3 5 7 8 10 11 13 15 17 18 20 22 24 25 and 27 were reversed table 4 shows the full list of questions below 1 it is important that my child loves both parents v 2 i value the other parents parenting skills r 3 i feel awkward when i am with the other parent a 4 i work well with the other parent when decisions need to be made about our child c 5 i am hostile or biting in my conversations with the other parent a the scale comprises 5 subscales animosity value trust respect and communication and is intended to measure coparenting dynamics across all family structures the 27 items are each categorized into one of the five subscales and were measured by a 5point likert scale ranging from 1 strongly disagree to 5 strongly agree all items were originally developed in english then they were translated by one mandarin native speaker and were reviewed and finetuned by a mandarinspeaking research assistant and a sociology professor at a leading chinese university with expertise in the field of coparenting the triple check process ensured the accuracy of the statements and their cultural adaptations due to linguistic subtleties when arranging all the items on the survey the order was randomly shuffled so items would not cluster together around each factor in the original survey some questions are positively phrased while some are negatively phrased a strong agreement with a high score on some questions may refer to a low level of the attribute being measured while other questions are measured in the reverse way to have all the directions of the questions consistent for later addition of the total scores the scores on questions 3 5 7 8 10 11 13 15 17 18 20 22 24 25 and 27 were reversed table 4 shows the full list of questions below the other parent tries to be a good parent but does not know enough about parenting to be the kind of parent our child needs t in the right column each letter corresponds to a factor name t trust v valuing the other parent r respect c communication a animosity the asterisk sign represents the items being reversed data collection procedure the survey was circulated among parents in china and in north america englishspeaking parents were recruited through multiple online platforms such as facebook instagram parenting organizations and some personal networks of our colleagues in the case of chinese parents in addition to these listed resources we also sent out flyers to wechat groups and wechat public official accounts our chinese colleague also referred us to some local nonprofit organizations she collaborated with as well an online version of the survey was offered to the participants which took them around 30 min to complete once they gave the informed consent at the beginning of the survey the participants were informed about their rights to inquire about the research or express any concerns as well as the potential risks and how to contact the researchers andor smith college irb the whole process protected participants anonymity and their datas confidentiality personal information was neither requested nor collected and responses were not shared with any external sources in full observance of the protocol approved by the smith college irb data analysis strategies we utilized 11 v29 and its extension spss amos v28 to complete all the necessary statistical analysis to test the stability of the shortform copafs factor structure the chinese sample was divided into 2 subsamples chinese mothers chinese fathers for each group the psychometric properties of the shortform scale and the 5 subscales around which the 27 items were hypothesized to cluster were calculated to test the validity of the shortform 27item copafs in its mandarin translation as it was found to perform well in englishspeaking samples in the previous study the internal consistency of each of the 5 subscales and the shortform copafs scale as a whole was expressed in terms of the cronbachs alpha coefficients confirmatory factor analyses were conducted with a maximum likelihood estimation method for each of the 5 subscales on both chinese mothers and fathers which assessed how well the measurement model captured the covariance between the items composing the 5 factors in terms of the whole scale the analyses showed how well the measurement model captured the covariance between the 5 subscales multiple model fit indices were calculated and reported first a chisquared test indicating the difference between observed and expected covariance metrics was calculated however as the value is strongly influenced by the sample size this could be misleading in either small samples or large samples a sample size above 200 cases may result in nonsignificance even when the model is appropriate 74 second the root mean square residual showing the square root of the discrepancy between the sample covariance matrix and the model covariance matrix was calculated third the comparative fit index representing the discrepancy between the data and the hypothesized model was calculated while adjusting for issues of sample size inherent in the chisquared test of model fit fourth the root mean square error of approximation measuring the discrepancy between the hypothesized model with optimally chosen parameter estimates and the variance matrix was calculated and reported the analysis also estimated the regression coefficients for each factor and the proportion of the variation explained by the factors relative to the whole model providing information about the stability of the construct across groupsthe extent to which the subscales and the whole scale measure what they were intended to measure thus it helped determine the comparability and accuracy of the model when applied to different groups last a set of multigroup invariance analyses were conducted to determine whether gender or cultureor bothwere significantly related to variation on the coparenting scale as a whole and on each of the five factors with the data collected from each group invariance analysis helped test the stability of the factor structure of the copafs scale and the individual parameters for equivalence across groups with conditions being gradually constrained configural metric and scalar invariance were tested configural invariance revealed if the same general specification of the model holds across the groups of participants and exhibits a good fit across groups while allowing the parameters of the unconstrained model within each group to be freely estimated metric invariance added further equality constraints to structural covariances scalar invariance constrains the measurement residuals in addition to the previous conditions results model fit examination of copafs scale using the data collected from chinese parents cronbach alpha values and the correlation matrices for five factors given that the internal validity of the copafs model for englishspeaking families was already examined and demonstrated in a previous study the first part of the results will solely report the cronbach alpha coefficients and model fit indices for chinese families 73 the cronbach alpha coefficient which estimates the extent to which the items in the scale are measuring the same underlying concept yielded a value of 0925 for the entire copafs scale in married chinese families on a scale from 0 to 1 such a high value indicates an excellent level of internal consistency of this scale to measure the coparenting relationship of chinese families as a closely related set of items however the cronbach alpha coefficients for each factor vary considerably ranging from quite satisfactory high values to low ones indicating poor internal consistency as indicated in table 5 below trust animosity and communication exhibited high cronbach alpha coefficient values implying the participants response values across the subsets of questions were very consistent however valuing the other parent and respect showed low values implying loose interrelations across items within these two subscales beyond the investigation of internal consistency of the single subscales correlations between the factors were also calculated to explore overlaps between the different subscales table 6 indicates moderate to high positive correlations between most factors suggesting that the subscales may measure similar concepts it is important to note however that these findings may also be attributed to the closely clustered nature of familyrelated concepts in peoples minds which might make it difficult for individuals to clearly differentiate between these five dimensions model fit indices for chinese mothers the chisquared value of the whole model was 352981 which is high for the differences between observed and expected covariance metrics however the value of x 2 m is overly sensitive to the sample size when testing the effectiveness of a model across different populations 7576 therefore there is no specific range of chisquared values that can be considered universally good or bad the root mean square residual was 0887 the square root of the difference between sample and model covariance matrix a value less than 008 is generally acknowledged as indicative of a good model fit after adjusting for the sample size representing the chisquared value the comparative fit index was calculated to be 0762 which is lower than the common acceptable cutoff value of 09 this value demonstrates the degree of discrepancy between the data and the model that was hypothesized the root mean square error of approximation value was 0399 which manifests the difference between the hypothesized model using the best parameter estimates and the variance matrix however this value is greater than 008 as the acceptable cutoff value for chinese fathers the value of the chisquared test was 101288 the rmr value was 104 the cfi value was 0718 the rmsea value was 0448 these model indices served as continuous indicators of the modeldata correspondence and could be interpreted as goodness or badness of fit of the model though some indices are quite sensitive to sample size others are not after combining the indices obtained from both chinese mothers and fathers and evaluating them we found that both patterns were similarly suboptimal the copafs model as a whole did not appear to be a particularly strong fit for the data indicating that it may require further refinement in future studies in order to improve its ability to accurately replicate the english data for chinese married families generally the statistics refute the first hypothesis this information is valuable for future research as efforts are needed to improve and refine the model until adequate model fit can be demonstrated yet additional information gleaned from the analyses suggests a more complicated picture than a simple rejection the relative importance of each factor as endorsed by englishspeaking parents and chinese parents factor loading analyses we next explored the strength of the relationships between each factor and the latent variable the coparenting relationship across all sample groups a higher value indicates a stronger association of the factor in accounting for the proportion of variance on the latent construct the maximum value for both the regression coefficient and variance of the coparenting relationship itself was set to 1 the regression coefficients of each subscale for chinese mothers ranged from 098 to 000 with animosity having the highest coefficient of 098 trust as 086 valuing the other parent as 075 respect as 057 and communication with 000 as the lowest all the results are statistically significant except for communication the results showed that chinese mothers are most attentive to animosity and least attentive to communication while evaluating the coparenting relationship the proportions of the variation of each subscale accounted for on the underlying construct were calculated along with the regression coefficients animosity explained 967 of the variance trust explained 744 valuing the other parent explained 572 respect explained 327 and communication explained 00 the pattern for chinese fathers was nearly identical to that of mothers the highest regression coefficient was 097 for animosity then 090 for trust 072 for valuing the other parent 052 for respect and 003 for communication animosity explained 945 of the variance trust explained 821 valuing the other parent explained 531 respect explained 271 and communication explained 00 again all the results were statistically significant except for communication according to these regression coefficients the communication factor did not explain any of the variation in the coparenting relationship quality for both chinese mothers and chinese fathers among chinese parents the understanding of a good coparenting relationship specified by the five subscales was quite different than in western culture trust and respect had the same highest correlation coefficients of 089 among englishspeaking mothers then the correlation was 087 for animosity 086 for communication and 071 for valuing the other parent trust and respect both explained 803 of the variance animosity explained 772 communication explained 747 and valuing the other parent explained 506 all the results are statistically significant a similar hierarchy of the importance of the subscales was found in englishspeaking fathers trust has the highest coefficient of 097 respect is 087 communication is 083 animosity is 082 and valuing the other parent is 081 all the results are statistically significant trust explained 870 of the variance respect explained 769 animosity explained 762 communication explained 704 and valuing the other parent explained 665 all five subscales were important to englishspeaking parents commenting on their coparenting relationships the major contrast between englishspeaking parents and chinese parents attitudes was the importance ascribed to respect and communication chinese parents tended to place less emphasis on respect as a factor contributing to a healthy coparenting relationship while communication was even deemed to be almost irrelevant in chinese culture in contrast both respect and communication were significantly more influential in the opinions of englishspeaking parents and received the same credit as the three other factors given all of the statistics above the second hypothesis was accepted because there were structural differences in the strength of correlations between englishspeaking and chinese couples testing the significance of gender and culture as two predictors that account for the variation in coparenting and the five factors multigroup invariance analysis as slight differences in gender and the disparate gap in regressions between respect and communication and coparenting relationship were observed between the two cultures in the second research question the importance of gender and culture as factors that explain noteworthy differences was investigated controlling for either gender or culture four multigroup invariance tests of the model were run each testing for configural metric and scalar invariances in the general measurement model three covariances between value and communication respect and communication and value and respect were present and acknowledged for more accurate outcomes the invariance was tested between chinese mothers and fathers englishspeaking mothers and fathers chinese mothers and englishspeaking mothers and chinese fathers and englishspeaking fathers results are summarized below in tables 811 table 8 compared chinese mothers and fathers to see if gender would be a predictor of significant differences in chinese culture at the configural level cfi is 099 and rmsea is 005 which showed the great fit of the model in terms of configural arrangement across chinese mothers and fathers at the metric level which constrained structural covariance the chisquared value is not significant and the null hypothesis that there was equivalence in factor variances and covariances between the two groups was accepted moving to the most restrictive scalar level the chisquared value was still nonsignificant the fit of the model was ensured with the invariance of measurement residuals at all three levels of invariance analysis there was no significant variance between chinese mothers and fathers thus it was concluded that gender was not a significant predictor of the variation on the coparenting scale as a whole nor on each of the five subscales for chinese parents table 9 compared englishspeaking mothers and fathers at the configural level cfi is 093 which is good while rmsea is 014 which is weak the statistics showed the model is acceptable in terms of configural arrangement across englishspeaking mothers and fathers at the metric level the chisquared value is not significant and the null hypothesis was accepted indicating that there was equivalence in factor variances and covariances between the two groups moving to the most restrictive scalar level the chisquared value was still nonsignificant the fit of the model was ensured with the invariance of measurement residuals at all three levels we found only significant invariance between englishspeaking mothers and fathers thus similarly to chinese parents it was concluded that gender was not a significant predictor of the variation on the coparenting scale as a whole nor on each of the five subscales in englishspeaking parents overall neither chinese nor englishspeaking parents illustrated distinct differences explained by their gender in response to the third research question gender was not found to be a significant predictor of the variation on coparenting the hypothesis to the third research question was hence rejected next two multigroup invariance tests were conducted to assess culture as a potential predictor while holding gender constant for both tests the cfi and rmsea values were not ideal cfi did not reach the benchmark of excellence while rmsea was higher than the normally accepted value suggesting the model fit was inadequate consequently null hypotheses at both metric and scalar level were rejected claiming that the structure of the model significantly differed between chinese and englishspeaking mothers it became apparent that culture was a significant predictor of variation in the coparenting scale and its five subscales for mothers across both cultures in the process of accumulating profiles for the coparenting relationship culture carried more weight than gender comparing tables 10 and11 the results of the comparison of the two father groups differed in comparison to the mother groups the metric invariance was accepted but not the scalar invariance taking measurement weights and structural covariance into account supported that there is no significant variance of the model between chinese and englishspeaking fathers however once restraining the measurement residuals significant differences appeared which is the same as mothers scalarlevel invariance comparison strictly speaking the result still showed a significant cultural effect on fathers values towards the five factors using the strictest level of multigroup invariance analysis results indicated that culture was a statistically significant factor associated with differences in coparenting across groups the findings suggest that the weight of each factor that influences coparenting relationships may differ significantly depending on the cultural context in which one responds to the items thus the fourth hypothesis that highlights the importance of culture was accepted discussion research overview built upon the review of the theoretical framework and measures constructed by other scholars in the coparenting field the copafs scale was developed to expand research on families in different contexts such as diverse family structures or cultures 141618 in the past few years englishspeaking parents with different marital statuses were used to validate the copafs scale in north america but the crosscultural feature of the scale as part of the original goal has not been explored and examined until now 73 in this study the overarching objective is to identify similarities or differences between englishspeaking and chinese married parents in recognition of the factors constituting coparenting relationship wellbeing via this innovative measurement tool we first estimated the fit of the copafs model in the chinese context then we measured the strength of different factors in both cultures with noticeable significant differences across groups we further investigated whether gender or culture contributed to such variations model fit of copafs under the chinese context although the copafs model was proven to be a valid measurement for englishspeaking participants the application of the model did not demonstrate effectiveness in this pilot study in a chinese context 73 we first investigated how well the items are closely clustered within the whole scale and each subscale the cronbach alpha value for the entire scale is 0925 which represents quite a high internal consistency of the scale however values of certain factors specifically valuing the other parents and respect are low compared to information obtained from englishspeaking parents showing that items within these two factors are more loosely interrelated as we further looked into various model fit indices generated from chinese participants the general conclusion we reached is that the overall model was a suboptimal fit for the chinese parents the unsatisfactory results we obtained suggest that the current copafs model is not yet an adequate representative measurement tool for the data from the recruited chinese married parents and should not be immediately applied for probing chinese parenting in real life the differences do not stem only from language differences but from cultural differences as the chinese sample emanated from china they were not chinesespeaking americans the model requires further refinement and localization before the researchers can use this tool to interpret the responses from chinese parents accurately to achieve this goal a more theoretical understanding of the chinese coparenting relationship is required for improving the scale a larger sample already under way may better account for cultural nuances in coparenting among the chinese parents different views of chinese and englishspeaking parents on elements of parenting moving from model examination to additional results we used confirmatory factor analyses to test relationship strengths between each of the factors and the holistic coparenting relationship the results illustrated statistically significant differences between chinese and englishspeaking parents in the weight they gave to communication and respect when evaluating the quality of their coparenting relationship with the regression coefficients being 000 and 003 for chinese mothers and fathers chinese parents showed a striking indifference towards the level of communication in coparenting much higher weight was given by englishspeaking parents with both regression coefficients hovering at approximately 85 the limited appreciation for communication in chinese coparenting seems contradictory to most western literature that emphasizes the significance of communication in facilitating positive coparental conversation and coparents individual wellbeing 2452 a potential explanation pertains to gendertyped caregiving patterns that exist more or less in chinese families 77 there has traditionally been a greater emphasis on the parental role compared to the spousal role 78 other research supports that women tend to compartmentalize the distinct roles of being a parent versus being a spouse 79 in most areas or countries fathers traditionally are involved less in childcare than mothers 80 while the proportion of fathers actively participating in childcare activities has increased in western industrialized countries chinese fathers in general maintain their secondary provider role which offers more financial than parenting support to meet the rigid social expectation of gender roles 8182 in contrast chinese mothers spend more time with children as emotional supporters and provide more practical care 82 some chinese mothers express satisfaction with their role as caregiver and do not actively seek practical assistance from the childs father in infant care 83 this division of parenting responsibility forms an interesting phenomenon summarized by an old chinese saying men work outside and women take care of the home which has gained renewed attention in china recently 8485 the tacit assumption of gender roles in chinese culture may be a contributing factor to the lower perceived need for communication among chinese parents due to the implicit division of parenting responsibilities based on gender there may be less overlap in childrearing tasks for chinese parents to discuss and reconcile as a result chinese parents are more likely to rely on their own perceptions of responsibilities and complementary roles of the other parent when participating in the childrearing process 82 in addition to communication respect was also found to be of relatively less importance in the coparenting environment of chinese parents while the regression coefficients of respect are 057 and 052 for chinese mothers and fathers the same coefficients are 089 and 087 for englishspeaking mothers and fathers in comparison chinese parents valued respect nearly 30 less than englishspeaking parents the obvious difference in the respect domain between chinese and englishspeaking parents might be ascribed to the shared sociocultural environment that most chinese participants experienced the majority of them included in this study were urban residents born during the nationwide implementation of chinas onechild policy the policy restricted the number of children married urban couples could have to one in order to control chinas population growth there is a dramatic shift in personalities in the younger generation from their parents 86 as the only child in the family they were invested with more resources and tended to exhibit stronger individualistic characteristics and more openmindedness towards entering marriage or not even if they are married they are less tolerant of their partners different opinions 87 these rigid views of parenting roles may lead to less effort or adherence to parental collaboration regarding decisions and practices of the other parent which in turn may contribute to their lower recognition of the importance of respect culture as the more dominant predictor than gender multigroup invariance analyses were used to explore whether gender or culture accounted for differences in weights of coparenting factors across four groups it was discovered that rather than gender culture was related to more significant variation in the copafs subscales at the most restrictive scalar level of the analyses significant variances were found between chinese mothers and englishspeaking mothers as well as chinese fathers and englishspeaking fathers culture is a social construct that is fulfilled with sets of distinct beliefs and behaviors that are shared by people living in the same culture to regulate their behaviors 88 coparenting ideologies are learned behaviors that differ according to what is deemed normative in a particular culture even though the common goal shared by all parents across the world is to nurture and encourage their children to be competent in their society the ways to achieve that goal vary greatly across cultural groups 8990 for example there are significant variations in maternal behaviors across modern industrialized countries such as argentina belgium israel italy and the us 88 additionally levels of progressive parenting attitudes and modernity of childrearing attitudes vary considerably across countries as diverse as china colombia italy jordan kenya the philippines sweden thailand and the us 88 previous research has also compared attachment and selfregulation patterns of us and japanese mothers 8891 however current literature on chinese parenting mostly focuses on chinese immigrant families in the us rather than chinese residents born in china thus there is a lack of direct comparison between englishspeaking and chinese local cultures this study provides a crucial piece of the puzzle for integrating crosscultural parenting comparisons with empirical evidence that highlights the differences between these two cultures furthermore this study serves as a resource for parenting scholars researching crosscultural parenting styles both conceptually and methodologically limitations and future research as mentioned earlier it is crucial to ensure the copafs scales model fits the chinese culture to interpret the data accurately to achieve crosscultural validity of instruments additional efforts are necessary to establish adapted equivalence 92 qualitative studies may be required to understand cultural and interpersonal dynamics among chinese parents to enhance the instruments accuracy it is also essential to confirm the conceptualization of profiles grouped under different factors to ensure that the measurement subscales have the same meaning across different cultural groups or it may be fruitful to encourage analysis of different meanings ascribed across cultures to the concept of coparenting regarding the methodology of this study a set of multigroup invariance tests were used to calculate the pvalues determining whether there were statistically significant differences by gender or culture given the sample size of nearly 1000 participants statistically significant results could also be due to the large sample size 60 though the copafs model shows some large differences in communication and respect between two cultures coparenting the survey was completed by only 534 chinese parents as the first wave of participants outside an englishspeaking culture there are likely geographical sampling limitations to this first study report moreover the composition of participants recruited in this study are mostly middleclass and welleducated people with a relatively low father participation rate compared to mothers as a result research findings may have low generalizability to populations characterized by different demographics for future research there are a few directions that can be extended in further investigation first although this study showed a poor model fit of the copafs scale for married chinese parents the model fit indices should be reexamined in other chinese family structures including those with mothergrandparent coparenting pairs second this study did not account for the variance within english datasets such as the racial and ethnic distribution of participants as it focused on a broader culturelevel comparison however future copafs studies that focus on englishspeaking populations might investigate racial diversity as an essential theme within and across englishspeaking participants from differing cultural backgrounds conclusions this study tested the validity of the copafs model and used it as a tool to reveal crosscultural differences in coparenting constructs between chinese and englishspeaking married families a series of model fit calculations revealed the currently limited applicability of the copafs model in explaining chinese parents responses this finding challenged our initial hypothesis and highlights the need for future work to revise and enhance the crosscultural adaptability of the scale in light of this realization this study ventured to compare parents from two distinct cultures revealing a sharp contrast between the two in terms of the endorsement of respect and communication the result substantiated our second hypothesis which posits that the relative importance of the factors varies significantly between parents from two cultures in order to examine the potential contributions of gender and culture multigroup invariance analyses were conducted to test our third and fourth hypotheses these analyses yielded novel evidence indicating that culture has a significant influence on the coparenting constructs endorsed by both chinese and englishspeaking parents while the influence of gender was found to be less pronounced as a result the gender hypothesis was rejected while the culture hypothesis was accepted overall the findings of this study underscore the critical role of cultural context in the study of coparenting relationships and identifies promising new research directions for future studies employing the copafs model there are a few practical as well as empirical implications in relation to this study although we have raised a popular genderrelated childrearing pattern in china as one possible reason why communication receives almost no attention from chinese parents there is currently little chinese literature directly addressing communication within the couples relationship using this genderdetermined parenting theory to explain this children 2023 10 1884 20 of 23 cultural difference would be challenging without first confirming the connection between presumed work division and the low endorsement of communication therefore further investigation is recommended in this area to delve deeper into this connection the same mechanism applies to the concept of respect the onechild policy should only be considered to be just one of many social factors that contribute to the diminished significance of respect between parents it may not be the most influential factor or there could potentially be a mediating variable that directly impacts parents values therefore conducting further research is necessary before a definitive and confident conclusion can be reached regarding the factors contributing to the downplaying of respect by chinese parents finally the high endorsement of hostility among the participants raises interesting questions about the nature of marriages in china and the role of conflict or anger in downplaying communication and respect perhaps the lack of communication helps keep the lid on covert hostilities that are intrapersonal and perhaps structurally created by conditions in chinese society such questions await further research with important implications for the wellbeing of chinas children and families data availability statement data are available to all interested parties upon reasonable request author contributions conceptualization tz and mkp methodology ja tz and mkp software tz validation ja and tz formal analysis ja and tz investigation mkp tz and ja data curation tz writingoriginal draft preparation tz and mkp writingreview and editing mkp and ja supervision mkp project administration mkp funding acquisition mkp all authors have read and agreed to the published version of the manuscript informed consent statement written informed consent was obtained from all subjects involved in this study to publish this paper

while coparentingrelated conceptual frameworks and empirical studies have received considerable attention in western countries there is far less attention on this topic in other regions this study seeks to fill this gap by comparing coparenting dynamics between englishspeaking and chinese parents this study begins by reviewing coparenting relationships in both western and chinese contexts study participants comprised 399 englishspeaking parents living in the us and canada and 534 chinese parents living in mainland china there were several waves of participant recruitment by sending out the flyers online or utilizing the professional networks to invite eligible parents the measurement tool copafs coparenting across family structures which has been validated in englishspeaking culture was used to compare the differences in coparenting constructs in two cultures first the model fit of copafs within chinese culture was examined with cronbach alpha values and relevant model fit indices such as comparative fit index and root mean square residual as most of the statistics fell below the expected level of excellence there is a need to locally adjust the entire model in order to better interpret chinese parenting the intensity of connection between each factor included in the model and the coparenting relationship as a whole was then investigated although most factors were endorsed similarly by chinese and englishspeaking parents there were notable differences in their opinions regarding communication and trust while englishspeaking parents highly valued these two elements within the coparenting process chinese parents showed almost no attentiveness to them in order to understand factors that may contribute to such a sharp contrast two main variables culture and gender were tested through a series of multigroup invariance analyses assessing equivalence across groups it was discovered that culture emerged as the more dominant determinant among the groups of participants the implications of crosscultural use of the copafs tool and future research directions are discussed

introduction although consumption patterns are believed to be highly personal they still present certain similarities among people sharing some overall characteristics determinant factors are ones age gender or education level while time and habitual environment can be also important at the same time similarities may be induced via interaction on social ties embedding an individual in a larger structure of a social network network effects may further increase behavioural similarities as social influence arriving from connected neighbours could potentially bias ones purchasing preferences 110 while these characters have been thoroughly studied in consumption behavioural research 2 3 4 5 6 the effects of socioeconomic status has been argued 7 8 9 to play also an important role in determining consumption behaviour ie the way for people to distribute their bounded financial capacities to purchase goods and services the socioeconomic status of a person is determined by several intervening factors as income educational level ethnic or occupation and its quantitative characterisation is a long lasting challenge the uneven distribution of purchasing power among individuals goes hand in hand with the emergence and reservation of socioeconomic inequalities in general individual financial capacities restrict personal consumer behaviour arguably correlate with ones purchasing preferences and play indisputable roles in determining the socioeconomic position of an ego in the larger society 10 11 12 13 14 moreover socioeconomic status 22 plays an important role in shaping the global social network structure its entangled effect with status homophily 2324 ie the tendency of people to connect to others at similar socioeconomic status induces biases in tie creation preferences which lead to a stratified social structure 132629 at large this way people of the same social class may be better connected among each other which further amplifies the emergence of common behavioural patterns characterising a given social group the investigation of broader relations between the consumption patterns socioeconomic status and demographic characters carries a great potential in understanding better rational socialeconomic behaviour 15 in addition the dynamics of consumption patterns is a largely unexplored area the dynamics of individual purchases may be strongly driven by periodic weekly fluctuations determined by ones occupation or demographic characters which gives further motivations to study purchase behaviour from a time perspective to explore such problems social network analysis provides one promising direction 16 due to its enormous benefit from the massive flow of human behavioural data provided by the digital data revolution 171920 on the other hand although social behavioural data provides us detailed knowledge about the structure and dynamics of social interactions it commonly fails to uncover the relationship between social and economic positions of individuals until now the coupled investigation of individual social and economic status remained a great challenge due to lack of appropriate data recording such details simultaneously even questions addressing correlation between consumption and social behaviour are at utmost interest in this paper we address these questions via the analysis of a dataset which simultaneously records the mobilephone communication bank transaction history and purchase sequences of millions of inhabitants of a latin american country over several months this corpus one among the firsts at this scale and details allows us to infer the socioeconomic status consumption habits and the underlying social structure of millions of connected individuals using this information our overall goal is to identify people with certain financial capacities and to understand how much money they spend on what they spend when they spend and whether they spend like their friends more precisely we formulate our study around three research questions • can one associate typical consumption patterns to people and to their peers belonging to the same or different socioeconomic classes and if yes how much such patterns vary between individuals or different classes • can one draw relations between commonly purchased goods or services in order to understand better individual consumption behaviour • can one identify typical dynamical patterns of purchasing different goods and services by people with different gender age and socioeconomic status after reviewing the related literature in section 2 we describe our dataset in section 3 and introduce individual socioeconomic indicators to define socioeconomic classes in section 4 in section 5 we show how typical consumption patterns vary among classes and we relate them to structural correlations in the social network in section 6 we draw a correlation network between consumption categories to detect patterns of commonly purchased goods and services subsequently in section 7 we address correlations between the weekly consumption dynamics of different purchasing categories with individual demographic and socioeconomic characters finally we present some concluding remarks and future research ideas related work earlier hypothesis on the relation between consumption patterns and socioeconomic inequalities and their correlations with demographic features such as age gender or social status were drawn from specific sociological studies 31 and from crossnational social surveys 32 however recently available large datasets help us to effectively validate and draw new hypotheses as populationlarge individual level observations and detailed analysis of human behavioural data became possible these studies shown that personal social interactions social influence 110 or homophily 37 in terms of age or gender 2 3 4 5 6 35 have strong effects on purchase behaviour knowledge which led to the emergent domain of online social marketing 36 yet it is challenging to measure correlations between social network individual social status and purchase patterns simultaneously 7 8 9 one promising direction to map a societylarge social network is provided by mobile phone data analysis 49 it has been shown that a social structure inferred from mobilephone communications provides a 95 proxy of the original social network 54 even socioeconomic parameters can be estimated from communication networks 33 50 51 52 53 or from external aggregate data 34 however usually they do not come together with information on individual purchase behaviour which can be the best estimated from anonymised purchased records 726 in terms of spatial distribution the relation between social networks and mobility patterns has been addressed in 27 while the spatial variance of purchasing habits has also been investigated in 28 on the other hand the dynamical variation of purchase patterns of different product categories is a largely unexplored area 18 as it requires temporally detailed data recording individual purchase histories in this paper we propose to explore these questions through the analysis of a combined dataset proposing simultaneous observations of social structure economic status and purchase dynamics of millions of individuals note that results presented below partially overlap with a related conference paper 21 which has been published in the proceeding of the asonam16 ieeeacm conference the present paper extends this earlier work in several ways including a detailed demographic analysis deeper understanding on purchasing distributions in different categories and the study addressing the dynamics of purchase patterns presented in section 7 data description in the following we are going to introduce two datasets extracted from a corpus combining informations about the mobile phone interactions and purchase history of individuals ds1 individual socialeconomic data with purchase distributions communication data used in our study records the temporal sequence of 7945240548 call and sms interactions of 111719360 anonymised mobile phone users for 21 months in a latin american country each call detailed record contains the time unique caller and callee ids the direction and the duration of the interaction at least one participant of each interaction is a client of a single mobile phone operator in the country but other mobile phone users who are not clients of the actual provider also appear in the dataset with unique ids all unique ids are anonymised as explained below thus individual identification of any person is impossible from the data using this dataset we constructed a large social network where nodes are users while links are drawn between any two users if they interacted at least once during the observation period we filtered out call services companies and other nonhuman actors from the social network by removing all nodes who appeared with either indegree k in 0 or outdegree k out 0 we repeated this procedure recursively until we received a network where each user had k in k out 0 i e made at least one outgoing and received at least one incoming communication event during the nearly two years of observation after construction and filtering the network remained with 82453814 users connected by 1002833289 links which were considered to be undirected after this point to calculate individual economic estimators we used a dataset provided by a single bank in the same country this data records financial details of 6002192 people assigned with unique anonymised identifiers over 8 the data provides time varying customer variables as the amount of their debit card purchases their monthly loans and static user attributes such as their billing postal code their age and their gender a subset of ids of the anonymised bank and mobile phone costumers were matched1 this way of combining the datasets allowed us to simultaneously observe the social structure and estimate economic status of the connected individuals this combined dataset contained 999456 ids which appeared in both corpuses however for the purpose of our study we considered only the largest connected component of this graph this way we operate with a connected social graph of 992538 people connected by 1960242 links for all of them with communication events and detailed bank records available to study consumption behaviour we used purchase sequences recording the time amount merchant category code of each purchase event of each individual during the observation period of 8 months purchase events are linked to one of the 281 merchant category codes indicating the type of the actual purchase like fast food restaurants airlines gas stations etc due to the large number of categories in this case we decided to group mccs by their types into 28 purchase category groups using the categorisation proposed in 38 after analysing each purchase groups 11 of them appeared with extremely low activity representing less than 03 of the total amount of purchases thus we decided to remove them from our analysis and use only the remaining k 17 set of 17 groups note that the group named service providers plays a particular role as it corresponds to cash retrievals and money transfers and it represents around 70 of the total amount of purchases as this group dominates over other ones and since we have no further information how the withdrawn cash was spent we analyse this group k 1 separately from the other k 217 k 17 k 1 set of groups this way we obtained ds1 which collects the social ties economic status and coarse grained purchase habit informations of ∼ 1 million people connected together into a large social network note that although these people are connected into a single connected component their observed social network is rather sparse as it is strongly limited by the intersecting user sets of the mobile provider and the bank this way ds1 provides us meaningful informations on the dyadic and egocentric network level however it does not captures many triads in the structure disallowing a study on the level of communities ds2 detailed ego purchase distributions with age and gender from the same bank transaction trace of 6002192 users we build a second data set ds2 this dataset collects data about the age and gender of individuals together with their purchase sequence recording the time amount and mcc of each debit card purchase of each ego to receive a set of active users we extracted a corpus of 4784745 people that were active at least two months during the observation period then for each ego we assigned a feature set p v age u gender u seg u r w c u where seg assigns a socioeconomic group r is an ego purchase distribution vector defined as r m c u c m c u that assigns the fraction of m c u money spent by user u on a merchant category c during the observation period we excluded purchases corresponding to cash retrievals and money transfers which would dominate our measures otherwise finally w c u is the ego weekly purchase distribution vector defined as the fraction of money spent by a user u on a merchant category c during the weekday d i such as i∈ 06 w c u 1 a minor fraction of purchases are not linked to valid mccs thus we excluded them from our calculations this way ds2 collects 3680652 individuals without information about their underlying social network but all assigned with a p v vector describing their personal demographic and purchasing features in details we introduced these two datasets separately because while in ds1 we have the advantage to access all informations including purchase patterns economic status and social ties its size is strongly limited by the intersection of the customer set of the mobile provider and the bank on the other hand we will discuss several measures where social network information is not essential thus we can exploit ds2 which is based on the considerably larger set of bank costumers even we have no information about their social ties measures of socioeconomic position to estimate the personal economic status we used a simple measure reflecting the consumption power of each individual starting from the raw data of ds2 which collects the amount and type of debit card purchases we estimated the economic position of individuals as their average monthly purchase more precisely in case of an ego u who spent m u amount in month t we calculated the amp as p u t∈t m u t u where t u corresponds to the number of active months of user u after sorting people by their amp values we computed the normalised cumulative distribution function of p u as c f f 0 p u u p u as a function of f fraction of people the c function in fig 1a shows that amp is distributed with a large variance signalling large economical imbalances just as suggested by the paretos law 42 a conventional way to quantify the variation of this distribution is provided by the gini coefficient g 43 which characterises the deviation of the c function from a perfectly balanced situation where wealth is evenly distributed among all individuals in our case we found g ≈ 0461 which is relatively close to the world bank reported value g 0481 for the studied country 44 and corresponds to a pareto index 45 α 1315 subsequently we used the c function to assign egos into 9 economic classes such that the sum of amp in each class s j was the same equal to n we decided to use 9 distinct classes based on the common threestratum model 40 which identifies three main social classes and for each of them three subclasses 41 there are several advantages of this classification it relies merely on individual economic estimators p u naturally partition egos into classes with decreasing sizes for richer groups and increasing p average amp values per egos note that even the size of identified classes decreases with socioeconomic status we still have several thousands of individuals in the highest class 9 which allows us to develop meaningful statistical claims about the behaviour of this set of people we also depict basic demographic informations about the different socioeconomic groups as a population pyramid from fig 1c we can conclude that the largest population is between age 2529 the largest fraction of people belong to the lowest socioeconomic group and that there are more men than women in each age group socioeconomic correlations in purchasing patterns in order to have an overall picture about possible differences between purchase preferences of people in different socioeconomic classes we were looking for correlations between individuals in different socioeconomic classes in terms of their consumption behaviour on the level of purchase category groups we analysed the purchasing behaviour of people in ds1 after categorising them into socioeconomic classes as explained in section 4 in fig 2a without considering cash that represents around 68 of the total spending we show the percentage of total amount of money spent on each pcg on average bank clients spend 265 of the total spending on retail stores 178 on high risk personal retail and 95 on restaurants etc for each line of the histogram percentages for the poorest middle and richest social class are shown by coloured dots it roughly points out major purchasing differences between social classes like in retail stores the poorest people spend 318 of their total amount of purchases whereas the richest class spend only 196 on the same category to receive a finer information about the distributions of purchases for each class s j we take every users u ∈ s j and calculate the m k u total amount of purchases they spent on a purchase category group k ∈ k 17 then we measure a fractional distribution of spending for each pcgs as r u∈sj m k u u∈s m k u where s j s j assigns the complete set of users in fig 2b each line shows the r distributions for a pcg as the function of s j social classes and lines are sorted by the total amount of money spent on the actual pcg purchase pattern similarities of socioeconomic classes from this first set of analysis we can already identify large differences in the spending behaviour of people from lower and upper classes to further investigate these dissimilarities on the individual level we consider the k 217 category set as defined in section 3 and build a spending vector sv sv 2 sv 17 for each ego u here each item sv k assigns the fraction of money m k u m u what user u spent on a category k ∈ k 217 out of hisher m u k∈k m k u total amount of purchases using these individual spending vectors we calculate the average spending vector of a given socioeconomic class as sv sv u∈sj we associate sv to a representative consumer of class s j and use this average vector to quantify differences between distinct socioeconomic classes as follows we measure the euclidean metric between average spending vectors as d sv sv k sv k 2 where v 2 k v2 k assigns the l 2 norm of a vector v computed over k ∈ k 217 purchase categories note that the diagonal elements of d sv are equal to zero by definition however in fig 2c the offdiagonal green component around the diagonal indicates that the average spending behaviour of a given class is the most similar to neighbouring classes while dissimilarities increase with the gap between socioeconomic classes we repeated the same measurement separately for the single category of cash purchases in this case the euclidean distance is defined between average scalar measures as d k1 sv 1 sv 1 2 interestingly results shown in fig 2d indicates that here the richest social classes appear with a very different behaviour this is due to their relative underspending in cash which can be also concluded from fig 2b on the other hand as going towards lower classes such differences decrease as cash usage starts to dominate to explain better the differences between socioeconomic classes in terms of purchasing patterns we introduce two additional scalar measures first we introduce the dispersion of individual spending vectors as compared to their class average as σ sv sv k sv k 2 u∈sj which appears with larger values if people in a given class allocate their spending very differently second we also calculate the shannon entropy of spending patterns as s sv k∈k217 sv k log to quantify the variability of the average spending vector for each class this measure is minimal if each ego of a class s j spends exclusively on the same single pcg while it is maximal if they equally spend on each pcg as it is shown in fig 2e dispersion decreases rapidly as going towards higher socioeconomic classes this assigns that richer people tends to be more similar in terms of their purchase behaviour on the other hand surprisingly in fig 2f the increasing trend of the corresponding entropy measure suggests that even richer people behave more similar in terms of spending behaviour they used to allocate their purchases in more pcgs these trends are consistent even in case of k 1 cash purchase category function depicted with dark blue line in in fig 2e or once we include category k 1 into the entropy measure s sv1 purchase pattern similarities in the social network to complete our investigation we characterise the effects of social relationships on the purchase habits of individuals we address this problem through an overall measure quantifying differences between individual purchase vectors of connected egos positioned in the same or different socioeconomic classes more precisely we consider each social tie ∈ e connecting individuals u ∈ s i and v ∈ s j and for each purchase category k we calculate the average absolute difference of their purchase vector items as d k sv k sv k u∈siv∈sj following that as a reference system we generated a corresponding configuration model network 56 by taking randomly selected edge pairs from the underlying social structure and swapped them without allowing multiple links and self loops in order to vanish any residual correlations we repeated this procedure in 5×e times this randomisation keeps the degree individual economic estimators p u the purchase vector sv and the assigned class of each people unchanged but destroys any structural correlations between egos in the social network consequently between socioeconomic classes as well after generating this reference structure we computed an equivalent measure d k rn but now using links ∈ e rn of the randomised network we repeated this procedure 100 times and calculated an average d k rn in order to quantify the effect of the social network we simply take the ratio l k d k d k rn and calculate its average l sv l k k over each category group k ∈ k 217 or respectively k 1 this measure shows whether connected people have more similar purchasing patterns than one would expect by chance without considering any effect of homophily social influence or structural correlations results depicted in fig 3a for l sv appear with a strong diagonal component which indicate that the purchasing patterns of individuals connected in the original structure are actually more similar than expected from the random reference structure on the other hand people from remote socioeconomic classes appear to be less similar than one would expect from the uncorrelated case 1 values typical for upper classes in fig 3a note that we found the same correlation trends in cash purchase patterns by measuring l k1 as shown in fig 3b these observations do not clearly assign whether homophily 2324 or social influence 10 induce the observed similarities in purchasing habits but undoubtedly clarifies that social ties and socioeconomic status play deterministic roles in the emerging similarities in consumption behaviour these results show that some categories appear to be more similar when considering social ties thus they might be more sensitive to interpersonal influence than others in order to quantify directly interpersonal similarities in purchase habits we take the network g and for each pcg c i we introduce a measure ρ defined as follow ρ r r × r r ∈e here ρ quantifies the tendency that two connected egos spend commonly in a same category c i if their behaviour is independent than ∈e rr ∈e r ∈e r and so ρ 1 on the other hand if their spending patterns on a given category show similarities the dependence measure is ρ 1 in fig 3c given the communication network the values of ρ are all greater than 1 meaning that connected people spend in any pcgs in a similar way thus their behaviour is not independent ie assortative patterns characterise the network this is even more evident once we curves with different shades assign equivalent measures recalculated on the original network and jackknife samples 25 after the removal of the 25 50 and 75 of links compare these results to equivalent ones measured on the configuration model graph there ρ is always close to 1 as ties were randomised thus connected neighbours are selected independently by definition a conventional way to test the variance of such assortative mixing patterns is by computing for each group the standard deviation of ρ using the jackknife method 25 in our case due to the several purchase category groups considered and the large number of links in the network the iterative edge removal process to compute the standard deviation in this way 25 is computationally not feasible nevertheless in order to demonstrate the variance of the observed assortative mixing patterns we removed the 25 50 and 75 of links randomly and recalculated the ρ values for each category using the remaining links as shown in fig 3 the recomputed curves vary weakly as we increase the fraction of removed links this way suggesting a small variance and strong robustness of the assortative spending patterns in the social network these results also demonstrate the dependences between the diversity of similarity of different pcgs some purchase category groups like education airlines business services or hotels are closely dependent over ties while ties have not much impact on purchases associated to everyday necessities like daily supermarket spendings purchase category correlations to study consumption patterns of single purchase categories pcgs provides a too coarse grained level of description hence to address our second question we use ds2 and we downscale from the category group level to the level of single merchant categories we are dealing with 271 categories after excluding some with less than 100 purchases and the categories linked to money transfer and cash retrieval as in section 3 we assign to each ego u a personal vector p v of four socioeconomic features the age the gender the social economic group and the distribution r of purchases in different merchant categories made by the central ego our aim here is to obtain an overall picture of the consumption structure at the level of merchant categories and to understand precisely how personal and socioeconomic features correlate with the spending behaviour of individuals and with the overall consumption structure as we noted in eq 1 the purchase spending vector r of an ego quantifies the fraction of money spent on a category c i using the spending vectors of n number of individuals we define an overall measure between categories as ρ r r × r r u∈v this symmetric formulae quantifies how much people spend on a category c i if they spend on an other c j category or vice versa therefore if ρ 1 the categories c i and c j are positively correlated and if ρ 1 categories are negatively correlated using ρ we can define a weighted correlation graph g ρ between categories c i ∈ v ρ where links ∈ e ρ are weighted by the ρ correlation values the weighted adjacency matrix of g ρ is shown in fig 4a as a heatmap matrix with logarithmically scaling colours importantly this matrix emerges with several block diagonal components suggesting present communities of strongly correlated categories in the graph to identify categories which were commonly purchased together we consider only links with positive correlations furthermore to avoid false positive correlations we consider a 10 error on r the worst global overestimation is reached when the two numerators r are overestimated and the two denominators r are underestimated by 10 in this case ρ approx 110 2 90 2 ρ real 149ρ real we insure to obtain only true positive correlations by taking ρ ≥ 15 values in addition to consider only representative correlations we take into account category pairs which were commonly purchased by at least 1000 consumers this way we receive a g ρ weighted subgraph of g ρ shown in fig 4b with 163 nodes and 1664 edges with weights ρ 15 to identify communities in g ρ indicated by the correlation matrix in fig 4a we applied a graph partitioning method based on the louvain algorithm 46 we obtained 17 communities depicted with different colours in fig 4b and as corresponding coloured frames in fig 4a interestingly each of these communities group a homogeneous set of merchant categories which could be assigned to similar types of purchasing activities in addition this graph indicates how different communities are connected together some of them like transportation it or personal serv playing a central role as connected to many other communities while other components like car sales and maintenance and hardware st or personal and health and medical serv are more connected among each other than to the rest of the network some groups emerge as standalone communities like office supp st while others like books and newspapers or newsstands and dutyfree shops appear as bridges despite their small sizes note that the main categories corresponding to everyday necessities related to food and telecommunication do not appear in this graph since they are responsible for the majority of total spending they are purchased necessarily by everyone without obviously enhancing the purchase in other categories thus they do not appear with strong correlations this observation may confirm results obtained in section 5 where pcgs such as miscellaneous stores and retail stores were not correlated with the social ties next we turn to study possible correlations between purchase categories and personal features first we assign an average feature set af s age gender seg to each of the 271 categories the average v of a feature v ∈ age gender seg assigns a weighted average value computed as v u∈ u i α i v u u∈ u i α i where v u denotes a feature of a user u from the u i set of individuals who spent on category c i here α i r n i corresponds to the average spending on category c i of the set of users from u i sharing the same value of the feature v and n i denotes the number of such users in other words eg in case of v age and c 742 age assigns the average age of people spent on veterinary services weighted by the amount they spent on it in case of v gender we assigned 0 to females and 1 to males thus the average gender of a category can take any real value between 0 1 indicating more females if gender ≤ 05 or more males otherwise we visualise this multimodal data in fig 5a as a scatter plot where axes scale with average age and seg while the shape and size of symbols correspond to the average gender of each category to further identify correlations we applied kmeans clustering 47 using the af s of each category the ideal number of clusters was 15 according to several criteria daviesbouldin criterion calinskiharabasz criterion and the gap method 48 colours in fig 5a assign the identified kmean clusters the first thing to remark in fig 5a is that the average age and the seg assigned to merchant categories are positively correlated with a pearson correlation coefficient 042 in other words elderly people used to purchase from more expensive categories or alternatively wealthier people tend to be older in accordance with our intuition at the same time some signs of gender imbalances can be also concluded from this plot wealthier people commonly appear to be males rather than females a pearson correlation measure between gender and seg which appears with a coefficient 029 confirms it on the other hand no strong correlation was observed between age and gender from this analysis note that these correlations are not only significant but they are in line with our earlier observations on demographics depicted in fig 1 to have an intuitive insight about the distribution of merchant categories we take a closer look at specific category codes as seen in fig 5a elderly people tend to purchase in specific categories such as medical serv funeral serv religious organisations motorhomes dealers donation legal serv whereas categories such as fast foods video game arcades cinema record st educational serv uniforms clothing passenger railways collegesuniversities are associated to younger individuals on average at the same time wealthier people purchase more in categories as snowmobile dealers secretarial 12 and text for 271 merchant categories summarised in table 1 axes assign average age and seg of purchase categories while gender information are assigned by symbols the shape of symbols assigns the dominant gender and their size scales with average values similar scatter plot computed for communities presented in fig 3b labels and colours are explained in the legend of fig 3a finally we repeated a similar analysis on communities found in fig 4b but computing the af s on a set of categories that belong to the same community results in fig 5b disclose positive ageseg correlations as observed in fig 5a together with somewhat intuitive distribution of the communities serv correlations in purchase dynamics the daily and weekly rhythms of people may be influenced by several external factors such as occupation family status habitual place hobbies just to mention a few in addition personal variables like age and gender may also play a role here and contribute to individual circadian patterns which were found recently 55 although all these parameters may influence the purchase dynamics of individuals 18 yet their simultaneous analysis is still rare the goal in this last section is to address our third scientific question to quantify correlations between socioeconomic status demographic characters and the dynamics of purchase patterns of people to tackle this question we define a weekly purchase vector for each user u we introduce the w k u fraction of money spent by user u on a pcg k on the day d i∈ 06 such as i∈ 06 w k u 1 we also define the global fraction of w u money spent by user u during the weekday d i∈ 06 to quantify the relevance of demographic features and social status in the dynamics of purchase habits we consider a set of egos x this set may represent a social class s j∈ 1 2 3 4 5 6 7 8 9 or a set of people belonging to a given age group a j∈ 010 or a group of egos with the same gender g j∈ 01 for a given group x whether we take a single pcg from k ∈ k 17 or a κ ⊂ k 17 set of pcgs and measure w k x w k u∈x w κ x w κ u∈x and w x w u∈x ie the w k x average weekly purchase vector of category k the w κ x average weekly purchase vector of categories κ and its global equivalent w x characterising the overall spending pattern of class x figure 6 weekly purchasing patterns according to social status age and gender as defined in eq14 w sj is the normalised distribution of spending in each day for each social classes w gj is the normalised distribution of spending in each day for female g 0 and male g 1 w aj is the normalised distribution of spending in each day for each group of age nodes of the same distributions are connected by lines to lead the eye for better interpretation in order to depict dynamical purchase patterns in fig 6ac we show the averaged weekly purchase vectors of groups of people with the same socioeconomic status gender and age there a global characteristic shape of the distributions appear over the weekdays with a peak on friday and a weaker signal on sunday one explanation of this overall pattern is rooted in the salary payment habits in the country where salaries are typically payed weekly or biweekly and most of the time on fridays while on sunday some shops are closed at first in fig 6a we show the average weekly purchase vector calculated for each socioeconomic class it shows a smooth substantial variation from the distribution of the poorest group to the richest one and suggests dependencies of weekly purchase activities on socioeconomic status it varies continuously from the rich class which spends rather constantly during the week but more on monday tuesday wednesday and sunday whereas poorer egos spend more on friday spending on fridays varies from w s1 217 to w s9 165 going from the poorest to the richest classes in fig 6b we show similar curves but now decoupled by gender interestingly gender effects appear to be negligible here assigning slightly higher activity on monday and saturday for female and on thursday and friday for male on the contrary age seems to play a determinant role in purchase activity patterns as we see in fig 6c youngest people between age 20 25 have a marked peak on friday and spend slightly more on thursday than other age groups contrary the oldest people get a higher activity in the beginning of the week whereas 4045 yearsold people spend more than other group on saturday and sunday these results suggest that the socioeconomic status and age of people are the most determinant characters when it turns to spending activity patterns while contrary to the intuition gender plays a less important role here going further purchase activities during the week may also differ from one pcgs to another to precisely show this in fig 7 we depict the w k sj normalised distribution of spending in each day for each social class and in each pcgs k ∈ k 116 some categories appear with the same temporal pattern like service providers retail stores high risk personal retail wholesale trade restaurants clothing st and entertainment which all present relatively low activity before pay day and high activity in the end of the week on the contrary the pcgs like gas stations automobiles professional services hotels and motels and airlines appear with high activity during the working period but with lower values during the weekends even larger differences appear while comparing social group activities the poorest class spends the most on fridays for many pcgs such as service providers gas stations education automobiles entertainment and airlines on the contrary richer people tend to spend on saturdays on entertainment restaurants wholesale trade and education while pcgs such as entertainment and education have marked variation over social classes others categories such as high risk personal retail and wholesale trades appear to be closely the same for each socioeconomic group as we studied in section 5 network effects may increase behavioral similarities we address this question by analysing an overall measure which captures differences between the purchase dynamics of connected individuals positioned in the same or different socioeconomic classes more precisely we consider each social tie ∈ e connecting individuals u ∈ s i and v ∈ s j and we calculate the average euclidean distance of their weekly purchase activity for a set κ ⊂ k 17 as δ κ w κ u w κ v 2 u∈siv∈sj similar to our analysis in section 5 we generate as a reference system a corresponding configuration network by taking randomly selected edge pairs from the underlying social structure and swap them without allowing multiple links and self loops and with the same parameters as earlier in order to study the effects of the social network here we introduce the ratio λ k217 for each category group k ∈ k 217 and separately λ k1 for the category group k 1 as just as in case of purchase amount distributions in fig 3 the normalised correlation matrix λ k217 in fig 8a appears with a diagonal component it indicates that the dynamics of purchase patterns of individuals connected in the original structure are actually more similar than expected in an uncorrelated network on the other hand people from remote socioeconomic classes appear to be less similar than one would expect from the reference case note that even we found similar correlations between social ties and weekly cash patterns these correlations appear to be somewhat weaker in this case λ k217 δ k217 δ rn k217 and λ k1 δ k1 δ rn k1 conclusion in this paper we analysed a multimodal dataset collecting the mobile phone communications and bank transactions of a large number of individuals from a latin american country this corpus allowed for an innovative global analysis both in terms of social network and in relation to the economical status and dynamical merchant patterns of individuals we introduced a way to estimate the socioeconomic status of each individual together with several measures to characterise their purchasing habits using these information we identified distinct socioeconomic classes which reflected strongly imbalanced distribution of purchasing power in the population after mapping the social network of egos from mobile phone interactions we showed that typical consumption patterns are strongly correlated with the socioeconomic classes and the social network behind we observed simultaneously these correlations on the individual and social class level in the second part of our study we detected correlations between copurchased merchant categories and introduced a correlation network which in turn emerged with communities grouping homogeneous sets of categories together we further analysed some multivariate relations between merchant categories and average demographic and socioeconomic features and found meaningful patterns of correlations of copurchased merchant categories finally we analysed dynamical purchase patterns and showed that while age and socioeconomic status are determinant factors gender seems to have a weaker role in differentiating between purchase habits similar to purchase distributions we found strong correlations in purchase dynamics between connected people belonging to the same socioeconomic class although our study is based on a combined dataset it comes with certain limitations first of all we have access to the customers of a single mobile operator of the country this sets some limitations as we cannot map out the complete social structure of the country only receive a good approximation of it by considering communication links between company and noncompany users we are also limited by the bank dataset which provides us several informations about the purchasing habits of people but its costumer set is only partially overlapping with the set of mobile costumers on the other hand after careful selection of bank users with available social network informations we still obtained a set of ∼ 1 million people which allowed us to perform a meaningful statistical analysis about their consumer habits we can foresee several new directions to explore in the future possible tracks would be to better understand the role of the social structure and interpersonal influence on individual purchasing habits the detection of causal correlated patterns of purchases or to study how dynamics in communication and in purchases are intertwined while the exploration of correlated patterns between commonly purchased brands may assign another promising direction beyond our general goal to better understand the relation between social and consuming behaviour these results may enhance applications in several areas examples are marketing and advertising where the knowledge of the reported correlations about copurchased products the effects of social ties or the dynamical variance of purchase habits provide valuable information for the design of more efficient strategies other area of application is related to consumer behaviour prediction in terms of purchase and social influence which is a rapidly growing field in the machine learning community these are just a few examples where our results can be applied meaningfully we hope that this contribution will foster further scientific studies on purchasesocial behaviour and meaningful applications in several domains

we analyse a coupled dataset collecting the mobile phone communications and bank transactions history of a large number of individuals living in a latin american country after mapping the social structure and introducing indicators of socioeconomic status demographic features and purchasing habits of individuals we show that typical consumption patterns are strongly correlated with identified socioeconomic classes leading to patterns of stratification in the social structure in addition we measure correlations between merchant categories and introduce a correlation network which emerges with a meaningful community structure we detect multivariate relations between merchant categories and show correlations in purchasing habits of individuals finally by analysing individual consumption histories we detect dynamical patterns in purchase behaviour and their correlations with the socioeconomic status demographic characters and the egocentric social network of individuals our work provides novel and detailed insight into the relations between social and consuming behaviour with potential applications in resource allocation marketing and recommendation system design

introduction violence is considered by the world health organization 1 to be one of the leading global public health problems in addition violence against women is one of the main forms of human rights violations 2 sexual violence is one of the categories of violence defined by who as actions ranging from harassment to forced penetration including different kinds of coercion and situations in which a person is unable to give consent 3 it is important to mention that the definition covers but is not limited to violence within marriage or romantic relationships 3 sexual violence occurs worldwide 4 and since 2008 the united nations has officially considered rape a war weapon 5 who reports that in some countries almost one in four women may experience violence perpetrated by an intimate partner and that almost a third of adolescent girls report that their first sexual experience has been forced 6 the centers for disease control and prevention reported that around 20 of women in the us had been raped during their lives 7 in brazil in 2019 there were 66123 cases of rape and rape of vulnerable persons where 579 of victims were no older than 13 years old 8 sexual violence causes repercussions not only on physical health due to the risk of acquiring sexually transmitted infections but also on mental health 267 the biopsychosocial consequences of sexual violence are difficult to measure as they affect most victims and their families and can produce intense and devastating often irreparable emotional effects 4 immediate medical assistance to people in sexual violence condition allows offering the prophylaxis of nonviral sti viral sti and emergency contraception thereby avoiding future damage to womens health 9 10 11 however health national database figures for 2011 from the notifiable diseases information system show that 461 of adolescents and 638 of adults in sexual violence condition have prophylaxis for sti and 35 of adolescents and 44 of adults performed emergency contraception 12 this study showed rates of 35 of sti and 71 of pregnancies due to rape 12 an american populationbased study showed a higher risk of sti diagnosis and treatment in women who suffered sexual violence regardless of the time after the event 13 it is known that the risk of acquiring sti depends on several factors such as the type of violence suffered the number of aggressors the type of exposure the occurrence of genital trauma the womans age and susceptibility hymenal condition the presence of sti pregnancy length and the form of coercion used by the aggressor 11 according to who sexual violence has been neglected by research 6 in brazil few quantitative studies have been conducted probably due to the difficulty of obtaining consistent and minimally qualified data 14 we analyzed the sociodemographic and epidemiological profile the frequency of procedures performed and the frequency of bbi pregnancy and legal abortion in women assisted by a sexual violence assistance center we presume that the frequency of sti and pregnancy may reflect the quality of sexual and reproductive health care of women in sexual violence conditions patients and methods this is a retrospective cohort study including adolescent and adult women aged 12 who were assisted by a sexual violence assistance center in vito ´ria espı ´rito santo state between january 01 2010 and december 31 2019 we extracted data from the medical records and used descriptive and analytics statistics in the analysis the sexual violence assistance center is the assistance for sexual violence victims program an extension program of the department of gynecology and obstetrics of the health sciences center federal university of espı ´rito santo the base of operations since 1998 is the cassiano anto ˆnio moraes university hospital the program works with a multidisciplinary team comprising gynecologists and obstetricians nurse social worker and psychologists it ensures access to sti prophylactic medication emergency contraception and legal abortion it is also checked hbv and hpv vaccination status pregnant women receive information about their right to abortion or adoption or prenatal care and usually they remain at the assistance center until delivery in the university hospital they also receive psychological care the data were extracted from the notification sheets and medical records and entered into excel spreadsheets the variables are demographic information clinical information characteristics of aggression procedures performed and complementary laboratory tests the software ibm spss statistics version 24 was used to conduct statistical analyses data characterization was presented as frequency percentage minimum and maximum values median mean and standard deviation the frequencies of sti and pregnancy were calculated to calculate prevalence only women who underwent blood collection were included in the denominator and only women with positive results on the first test were included in the numerator to calculate incidence only women who had a negative result for sti in the first blood collection were included in the denominator and those with a positive test in the second examination were included in the numerator the second positive test was considered to be any positive test within six months of followup excluding the first test fishers exact test was used for situations where expected values were below 5 the chisquared test measures the association between independent categorical variables and outcomes mcnemars test associated with sti and the pregnancy test between the 1st and 2nd tests performed at first patient care and at the return for case followup for the study variables presenting a statistical significance of 10 in the chisquared test the unadjusted odds ratio was calculated and adjusted using the regression model multiple logistic regression with the forward variable selection method was used to evaluate the association of outcomes with possible risk or protection factors these associations were carried out considering the 1st and 2nd exams together and also the 2nd exam alone the alpha significance level used in all analyses was 5 the use of secondary data and notification forms was approved by hucam management the study was submitted and approved by hucam research ethics committee under number 22133182017 we did not have contact with patients confidentiality of information was protected so that the patients identity was kept safe results and discussion the study included 915 women in sexual violence conditions assisted by the pavi ´vis program the majority 933 were from vito ´ria metropolitan area towns the sociodemographic characteristics of the women can be seen in table 1 regarding gynecological and obstetric history the mean number of children of the women in the sample was 18 the number of spontaneous abortions was 15 and induced abortions 1 the mean age of coitarche was 159 the mean of sexual partners was 32 and 229 were using contraception about a third of the women had not initiated sex life and 16 women were pregnant when they suffered sexual violence around 250 of the women in the study were victims of recurrent sexual violence only 26 reported the use of illegal drugs and 60 related the use of alcohol regarding the characteristics of the assaults 920 of the cases of sexual violence in this sample were rape most episodes occurred in violent places at in the metropolitan area sixty percent were threatened by hanging 03 physical force or beating 45 drug 50 cuttingpiercing 113 fire gun 193 regarding the number of aggressors and whether they were known 894 reported one aggressor in 515 of cases the aggressor was an acquaintance or relative 672 acquaintance 117 stepfather 70 father 49 boyfriend 34 exhusband or exboyfriend 30 institutional relationship 21 husband15 brother 02 son and 02 caregiver table 2 shows the procedures performed in the women assisted by the program 426 were attended within 72 hours 369 received sti prophylaxis and emergency contraception table 3 describes the frequencies of bbi and pregnancy in the population who underwent blood collection for analysis it can be observed higher frequency of sti after the violence event trichomoniasis was identified in 19 of women who underwent cervical cytology collection cervical cytology results presented the following lesions 28 lsil and 19 hsil both hpvinduced cytological lesions about 20 of the cytologies had predominant flora of coccobacilli g vaginalis and mobiluncus microbiota that characterizes bacterial vaginosis regarding the womens sexual history those reporting more than one sexual partner had a 13 times increased chance of testing positive for syphilis on the 2nd test compared to those reporting only one sexual partner and those reporting the age of coitarche being 13 years or older had a significantly lower odds of testing positive on hepatitis b compared to those reporting age of coitarche being 12 years or younger regarding the characteristics of the aggressions the occurrence of three or more aggressors increased the chance of a diagnosis of syphilis by 147 times and of hepatitis b by 123 times in addition to increasing the chance occurrence of hpvinduced cervical cytological lesion by 226 times when compared to violence perpetrated by one aggressor we found 275 of pregnancies resulting from sexual violence with a higher chance of pregnancy between ages 23 and between ages 24 and 29 when compared to those older than 29 years of age among these pregnant women 58 received emergency contraception and still became pregnant 750 underwent legal abortion among women who were threatened the use of firearms was associated with 57 times higher chance of becoming pregnant the sociodemographic data of the women included in the study are similar to the brazilian data described in sinan in 2011 and in the brazilian public security yearbooks of 2020 and 2021 715 in which the vast majority of women in sexual violence condition have low education children and adolescents account for more than 70 of the victims most are white or brownskinned and single women are more targeted than married women 812 about a third of the women had not yet started their sex life when they suffered sexual violence a similar figure to the one described by rosa et al 16 and by who 3 which can be related to sample characteristic once we included girls from 12 years old age at which adolescence begins according to the statute of children and adolescents 17 it is noteworthy that 424 of the sample were between 12 and 17 years old we point out that 257 were between 12 and 14 years old an age that comprises the socalled rape of the vulnerable by brazilian law 18 in brazil in situations of violence against adolescents and children the child and adolescent guardianship council must be notified as recommended by the child and adolescent statute 17 which triggers the health surveillance and the victims are admitted at health services to receive prophylaxis and prenatal care it can be a reason of the big number of adolescent girls in the sample nonetheless data from the 2021 brazilian public security yearbook 15 which sources are police data show that 606 of rape victims in brazil in 2020 were only up to 13 years old unfortunately early sexualization and sexual violence against children and adolescents is still an issue surrounded by taboos fears omissions and even indifference in various segments of society 19 on the other hand sinan data includes women victims who sought help from health services so it is possible to occur an underrepresentation of adult women who have become invisible to societys eyes because they have not sought help given the taboos fear and shame involved 20 generally 70 of sexual violence cases are committed by relatives boyfriends or friends acquaintances of the victim unknown offenders become the main perpetrators as the victims age increases 12 who 1 recognizes multiple factors that interfere at individual community and social levels pointing out risk factors for a man to commit sexual violence being a member of gangs use of alcohol or drugs antisocial personality parental violence physical or sexual abuse in childhood low educational level gender imbalance the socalled rape culture brings reflections on the social dynamics of gender relations 21 it is in general terms the sharing of values beliefs and practices about gender roles and the sexual interactions that not only allow but also structure unequal relationships in which an active sexual interest must conquer and subdue the object of desire 21 this culture understood as a universe of shared practices and symbols that justifies or minimizes the seriousness and social dimension of rape and other forms of abuse makes possible and naturalizes countless violations of girls and women 21 addressing this problem requires cooperation between the health education and justice sectors intervening in communities to change gender behaviors and improving womens social and economic conditions 120 according to cerqueira coelho 12 threat and bodily forceassault are strongly present and more frequent the higher the victims age group is whether the aggressor is known or not it is known that the use of blunt or cutting objects also increases the higher the age group is and it is always higher when the aggressor is unknown 12 the threat with a fire gun which can inhibit the womans resistance to the perpetrator was associated with 57 times higher chance of becoming pregnant the objective of prophylaxis in sexual violence victims is to prevent and treat the most prevalent sti and pregnancy and the brazilian ministry of health recommends protocols and table 5 frequencies of performed clinical procedures and the incidence of bloodborne infections pregnancies and legal abortions by period in women in sexual violence situations assisted by pavi ´vis between 2010 and 2019 technical standards for this type of assistance which are followed by the pavivis team 9 10 11 since 2001 the inclusion of violencedomestic sexual and other forms of violencein the list of compulsorily notifiable diseases by the brazilian ministry of health implemented the national policy for the reduction of morbidity and mortality from accidents and violence made data from health sector become visible sometimes more than those from police sector 20 in parallel several laws have reinforced and guided health assistance to sexual violence victims throughout the country 22 since 2013 brazilian law has ensured mandatory and immediate care in the unified national health system for people in sexual violence condition and public hospitals must provide immediately emergency contraception diagnosis and treatment of genital injuries medical psychological and social support prophylaxis of nonviral and viral sti access to information about legal rights and health services available in the public health system 22 there is a gap between the mandatory law and its implementation in the studied clinic data are described on table 5 the law was important to give visibility to this problem and providing a legal instrument to push for the clinics implementation but despite the law our clinic and many others in the country have difficulties to support the recommended implementation 412 in brazil as all health services are free of charge public clinics and hospital are in charge to provide the procedures and several times unfortunately it does not happen adequately regardless these challenges higher number of women have had access to legal abortion in our clinic in the last years despite the covid19 pandemic it shows the law had some effect in the offered care but there were still many women who did not have access to the procedures showing we have a long way to go to improve our assistance another finding in this study was the low percentage of patients who underwent prophylaxis procedures for bacterial and viral sti around 400 the vast majority had blood samples collected evidence collection medicolegal examination and forensic documentation were not performed at our hospital or ambulatorial settings which explains only 11 of vaginal samples collected these procedures occur at the mediclegal institute a woman who received sti prophylaxis had 992 less chance of becoming pregnant and 661 less chance of developing bacterial vaginosis than one who did not receive prophylaxis it is worrying that less than 50 of women in sexual violence receive sti prophylaxis most of the women in the sample were young had low education and knew the attacker characteristics associated with a lower chance of receiving prophylaxis for sti 12 around 25 suffered recurrent sexual violence which also decreases the chance of receiving prophylaxis for sti 12 the low percentual of victims receiving sti prophylaxis is similar to those brazilian data described by sinan 12 which evidences a health system failure in womens health care initial screening for sti showed less than 10 of cases of syphilis and hepatitis b and subsequent screenings showed incidence levels of 11 for syphilis 08 for hepatitis b and 06 for hepatitis c there was no testing for chlamydia trachomatis and neisseria gonorrhoeae during the study period due to budget constraints and it was a limitation on the quality of health assistance testing for these microorganisms available by unhs in 2021 will improve the quality of health assistance in brazil the risk of acquiring an sti depends on the type of penetration the number of aggressors how often the aggression occurs and the womans age and susceptibility 29 for drezett et al 23 considering all the possible specific risks approximately 50 of women victims of sexual violence face some sti according to the brazilian ministry of health 2 this rate varies from 16 to 58 sinan data 12 indicate 36 of sti cases are secondary to rape delziovo et al 24 analyzing data from santa catarina state brazil between 2008 and 2013 found 30 58 and 24 of sti due to sexual violence in the age groups 10 to 14 15 to 19 and older than 20 respectively less than 50 of women receiving sti prophylaxis do not seem to match the low frequency of sti found authors point out that there are data on the rate of sti acquisition after sexual violence most data are on sti prevalence on initial evaluation 25 26 27 28 29 however sexual violence is often one of the biggest predictors of sti 13 these authors showed that women who experienced sex without consent were more tested for sti and showed higher rates of herpes genital warts and chlamydia than the group of women who never had the same experience that sex without consent increased the risk for diagnosis and treatment of sti and that the population is susceptible although sti cannot always be attributed to the event of sexual violence 13 the frequency of sti in rape victims was also described in other studies hepatitis c 14 to 3 hepatitis b 3 gonorrhea 35 to 12 trichomoniasis 31 to 22 syphilis 25 2suffer sexual crimes 2829 in our study a greater number of sexual partners increased the chance of contamination by syphilis and an increase in the age of coitarche decreased the chance of contamination by hepatitis b although hbv vaccination in brazil its important to point out that espı ´rito santo state where the study took place presents high endemicity of hbv 30 regarding the characteristics of sexual violence we found that the occurrence of three or more aggressors increased the chance of a diagnosis of syphilis by 147 times and of hepatitis b by 123 times in addition to increasing the chance of presenting hpvinduced cervical cytological lesion by 226 times compared to violence by one aggressor brazilian data have previously shown an increase in sti cases when more than one aggressor was envolved 24 and a major frequency of more than one aggressor among adolescents 12 it is remarkable that the occurrence of gang rape corresponded to 158 of all cases of sinan data in 2014 1220 we did not find any prevalent or incident cases of hiv hiv infection represents the main concern for about 70 of victims of sexual violence 31 wellconducted studies indicate that the possibility of hiv contamination ranges from 08 to 27 comparable to the risk found in other forms of single sexual exposure or in occupational accidents among health professionals 9 10 11 31 in south africa was observed an increase from 09 to 64 in the percentages of positive tests for hiv among women in sexual violence condition with more frequent cases among young people aged 16 to 20 32 it is estimated that 20 thousand young women and girls in uganda will be infected with hiv each year as a result of rape 28 one of the factors contributing to this forecast is the use of rape as a war weapon in africa 52832 an increasing number of women seek health services for protective measures promptly but an important percentage is not given adequate medication for sti prophylaxis 1224 this inability to assist approximately half of the women in sexual violence conditions reveals a failure to ensure reproductive rights involving health policies training of medical students and health professionals and dissemination to the population of the importance and availability of early care provided by unhs for people in sexual violence conditions 11 around 40 of the women in the study did not receive emergency contraception data from sinan 12 show that 35 to 40 of women victims of sexual violence perform emergency contraception delziovo et al 24 show that around 30 were not attended to in up to 72 hours and did not receive emergency contraception a surprising 278 were attended to in up to 72 hours but did not receive emergency contraception emergency contraception although a womens right and one of the most important actions in immediate assistance after sexual violence is ignored and not rarely omitted for unjustifiable reasons 33 a brazilian study in santa catarina state 24 showed 76 of pregnancies due to sexual violence a higher rate in the group that was attended to 72 hours after the event and did not receive emergency contraception we found 272 of pregnancies resulting from sexual violence with a higher chance of pregnancy between ages 18 and 23 and between ages 24 and 29 we consider this percentage to be high compared with data of rosa et al 15 sinan 12 delziovo et al 24 and the brazilian ministry of health 2 which estimates pregnancy risk from rape to be between 05 and 5 it is known that the risk of pregnancy resulting from sexual violence depends on the victims age coincidence with her fertile period whether the violence was an isolated or ongoing event and whether the victim was using contraceptive methods knowing or not the aggressor 2 recurrence is more common among adolescent victims 12 which may have contributed to the high occurrence of pregnancies we emphasize that health assistance for sexual violence victims must include both sti and emergency contraception to reflect good health care another point regarding the lack of access to sexual health and adult women underreporting may be the position occupied by women in society which is relevant when thinking about how victims cope with violence 34 the context in which women suffer chronic violence or the delay in reporting it or seeking health services must be considered once they belong in a patriarchal judeochristian culture that historically tends to blame and discredit women especially when it comes to sexual issues 12 its common to blame women who suffer violence as provocateursculprits of that situation ascribing it to some behavior or attitude classified as inappropriate 12 fear of stigmatization can lead to delays in seeking medical care 12 of the 172 women who became pregnant after abuse 129 interrupted pregnancy cerqueira coelho 12 show that 5 of adolescents and 193 of adults who suffered sexual violence had legal abortions a percentage much lower than that shown in our sample this may reflect the characteristics of the sexual violence assistance center a benchmark for legal abortion in espı ´rito santo state the limitations of this study have to do with the small sample size and the use of secondary data which due to the stigma embarrassment to seek and difficulty to access help may have caused underreporting of adult women but it is important to bring up the invisibility of these women in the health and police sectors the program has many limitations but it is a pioneer health center it has assisted several women over the last 23 years also allowing the spreading of skills in this kind of assistance these data can highlight the program and help to improve the quality of its assistance low rates of sti can be explained by not testing for c trachomatis and n gonorrhoeae this is undoubtedly a limitation of the study nonetheless the dissemination of these data bearing in mind their limitations is important because it is worrying that many women do not access sexual and reproductive health rights which integrates the list of fundamental guarantees recognizing sexual and reproductive rights as human rights 411 once brazil has an international commitment to promote public policies capable of ensuring reproductive rights 4 conclusions the sociodemographic aspects and the characteristics of the aggressions in the studied population are similar to those described in the national database the number of adolescents in the sample is remarkable and brings reflections on early sexualization rape culture and adult women victims invisibility sti prophylaxis and emergency contraception were performed by around 40 of the women both data on prophylaxis are similar to those described in the national database the majority had blood samples collected and a small percentage had vaginal samples collected the prevalence and incidence of sti were low and there was an association of sti with three or more aggressors committing violence number of sexual partners age of coitarche and sti prophylaxis the use of firearms increases the risk of pregnancy sti prophylaxis on the other hand decreased the chance of pregnancy the frequency of pregnancy resulting from sexual violence was surprisingly high the frequency of legal abortion among these pregnancies was higher than reported in the national database we hope that this study will draw attention to the need to implement public policies guaranteeing reproductive rights and to develop strategies that will enable wide access and better quality of health care for women in sexual violence conditions thereby reducing their vulnerability to sti and unwanted pregnancies all relevant data are within the paper and its supporting information files supporting information s1 data project administration ange ´lica espinosa miranda resources chiara musso ribeiro de oliveira souza software gustavo ribeiro lima supervision ange ´lica espinosa miranda writing original draft chiara musso ribeiro de oliveira souza gustavo ribeiro lima writing review editing chiara musso ribeiro de oliveira souza ange ´lica espinosa miranda

sexually transmitted infections sti and pregnancy can be consequences of sexual violence in brazil around 50 of women victims of sexual violence do not undergo sti prophylaxis or emergency contraceptionto analyze sociodemographic and epidemiological profile frequency of procedures performed frequency of bloodborne infections bbi pregnancy and legal abortion in women assisted by a sexual violence assistance centerthis 10year retrospective cohort study 20102019 describes the sociodemographic and epidemiological profile and frequencies of clinical procedures bbi pregnancies and legal abortions in 915 women assisted in a sexual violence assistance center in brazil we extracted data from the medical records and used descriptive statistics and chisquare and logistic regressiona total of 933 842915 were residents in the metropolitan area of the capital 8083 733915 were brownskinned or white 424 388915 were adolescents 1217 years old 804 736915 were single most had no children average of 18 ±10 dp children about onethird 313915 had not had previous sexual intercourse 16 10653 were pregnant rape predominated with 920 841915 of which 515 471915 involved a